Why I am voting for Elizabeth Warren

CC BY Mark Nozell https://flic.kr/p/2gJcYXm
Bailey Warren (CC BY Mark Nozell)

If you’re having a hard time deciding who to vote for in the Democratic primary, I’d like to share why I’m voting for (and volunteering for and donating to) Elizabeth Warren.

The short version is that Warren has spent most of her life fighting for progressive values, and winning! In my opinion, she has the best chance of fixing U.S. healthcare, fighting income inequality, and winning the election against Trump.

Here are a few of the reasons why I think she’s the best choice:

  • Warren wins. She won a difficult Senate race against a popular, well-funded Republican. When Warren faces a tough problem, she gets excited and energized. Campaigning against Trump will be a very tough problem.
  • Warren gets things done. As a law professor, Warren envisioned and created the Consumer Financial Protection Bureau, which has forced corporations to return more than $12 billion to ordinary Americans. As a Senator, she was primary sponsor of 9 successful bills in 8 years.
  • Warren is quick-witted and impossible to fluster. She won trophies for debate, taught in public school, became a lawyer, and taught law school—and it shows. She obliterated Bloomberg in the first five minutes of his first debate and will do the same to Trump.
  • Warren learns and adapts quickly. Warren sticks to her principles but is willing to change her tactics and message as necessary. She rarely lets her ego or self-image get in the way.
  • Warren responds well to criticism. When she makes a mistake, she listens to the people who tell her how she messed up. Warren went from the candidate who didn’t know the difference between a DNA test and tribal membership to the candidate with the best, most comprehensive plan for honoring and empowering tribal nations and indigenous peoples—and the endorsement of Deb Haaland, one of the first two Native American woman elected to Congress.
  • Warren builds coalitions. She welcomes new allies without leaving behind the most marginalized among us. She holds firm on reproductive rights for people with uteruses, puts communities of color first in her climate change plans, and plans to invest billions in childcare and education. I trust her not to treat vulnerable people like bargaining chips.
  • Warren attracts kind, competent people. Every volunteer event I’ve attended for Warren has been a delight: welcoming, inclusive, organized, and effective. Warren makes smart hiring decisions and puts a lot of thought into which endorsements to give and accept.
  • Many people like and respect Warren. I’ve volunteered for a lot of political campaigns, and it’s striking how warmly and positively people talk about Warren, even when they’ve decided that they should vote for another candidate. It will be easy for her to build a winning coalition.

If you’re genuinely considering voting for Elizabeth Warren, and want more information, I’d be happy to answer your questions in the comments or by email. You can also check out all of her (detailed! effective! brilliant!) plans here. I’m also happy to share my experiences volunteering for Warren. (If you have more money than time, you can always donate to the Warren campaign as well.)

Thank you for reading! Let’s get out and vote!

 

via GIPHY

Iron and cheese: how I used lactoferrin to treat iron overload (part 4)

This is a follow-up to a three-part series about how I used lactoferrin to treat my iron overload under the supervision of a doctor (part 1, part 2, part 3).

Disclaimer: this is not medical advice. Talk to your doctor before making medical decisions.

A lot of people have emailed me about lactoferrin and iron overload, which I really appreciate! Since many people are asking similar questions, I decided to answer them in a follow-up post.

Q. What brand of lactoferrin did you use?

Initially, I used Jarrow brand lactoferrin, which one of their support staff confirmed to be apolactoferrin in 2018. I personally don’t think the brand matters as long as it is apolactoferrin, which most lactoferrin products are. I am currently using the Vitacost brand of lactoferrin and it seems to work just as well as the Jarrow.

Q. When did you take lactoferrin and was it with or without food?

I was taking lactoferrin in the morning, along with a lot of other supplements and medications, and sometimes with food and sometimes without. I don’t think it matters much when you take it or whether you take it with food. Theoretically, I would guess you would get the best effect by taking it away from any food containing iron, but if you have iron overload you are probably already limiting your iron intake. Based on my personal experience, I don’t think the timing of the dose matters as much as the quantity.

Q. Where does the iron go after it binds to the lactoferrin? Does it stay in your body?

I was trying to be delicate about this in the original post, but I guess I just have to say it: you poop out the lactoferrin and the iron that binds to it. You swallow the lactoferrin, most of it stays in your GI tract, binds to iron from your body (becoming hololactoferrin), and then you poop it out. So taking apolactoferrin removes iron from your body by depositing it into your feces.

Q. Will my iron overload symptoms go away and how quickly?

It depends on the symptom. For me, the fatigue improved within a few days and I believe it was because it was lowering the free iron in my blood stream, which causes at least some of the fatigue. Some people have a reduction in joint pain after lowering iron levels, but most do not, and some start having joint pain! Sometimes taking colchicine can reduce the joint pain. Symptoms from organ damage depends on whether the organ can repair itself and how bad the damage was.

Q. How bad are the black tooth spots from taking lactoferrin?

Here are my teeth after taking lactoferrin for about 1.5 years:

Closeup of a smile with white teeth

I do actually have some minor discoloration here and there but it’s really hard to tell if you’re not my dentist. Most of the discoloration is from the spots I got when I first started taking lactoferrin and didn’t know that I could get black tooth spots. If you’re reading this, you can do a better job of brushing your teeth than I did.

Here is my entirely cosmetic recommendation if you are worried about developing black tooth spots while taking lactoferrin:

  1. Take several photos of your teeth before you start taking lactoferrin.
  2. Brush at least twice a day, using baking soda and/or a stain-removing toothpaste.
  3. Check your teeth for new spots every few days, using your photos as a reference.
  4. Stop taking lactoferrin if you notice spots that you don’t like.

Q. I have lowered my ferritin to safe maintenance levels, but my serum iron and iron saturation are still high. What is happening?

This sounds like “iron avidity” and happens a lot to people with iron overload who have swiftly reduce their iron stores. It appears as though the body decides that iron is scarce and it needs to hang on desperately to every bit of iron it can get. The solution is apparently to treat iron avidity like iron deficiency and actually supplement iron until the iron saturation goes down! Iron metabolism is weird, man.

Again, if you talk to your doctor and try to lower your iron levels using apolactoferrin, please email me and let me know how it went!

 

In case of authoritarian takeover, break glass

Reasonable people can differ on whether it is now possible to stop the authoritarian takeover of the U.S. government. If you still have hope, I support your work and optimism and don’t want to change your mind. (I personally wrote the first draft of this post while attending a protest of the upcoming Senate vote to acquit Trump.) But if you are thinking about executing your personal “In Case of Authoritarian Takeover” plan, but are worrying that you are being too dramatic, I want you to know that I am executing my plan.

My personal plan is to emigrate to a country with a healthy democracy and good long-term prospects for keeping it. My fiancé and I love San Francisco and expected to spend the rest of our lives here. We are heartbroken to be leaving but neither of us can tolerate living under an authoritarian government.

The people who most need to emigrate are often those who are least able to do so. This is true in my case; I have an incurable chronic illness which makes it difficult to gain permanent residency in any country with what I need most: reliable accessible health care. I started my first application for a residency visa shortly after Brett Kavanaugh was confirmed to the Supreme Court by the Senate (in a preview of how the Senate will likely vote on impeachment). Unfortunately, my first visa application failed, but I have hope that my next application will succeed.

I greatly respect all the people who, in the lead up to and during World War II, tampered with Nazi databases, brawled with fascists in the street, and smuggled people across borders. The modern antifa movement is doxxing neo-Nazis, counter-protesting Proud Boys, and generally putting their bodies on the line to protect those targeted by the Trump administration. Others are organizing protests, reporting on corruption, and working behind the scenes to keep everyone fed and cared for. I am grateful for everyone doing this work in whatever capacity they can.

I will be thrilled to be proved wrong, and would love to return to San Francisco if the U.S. somehow manages to head off authoritarianism. But it is now a matter of urgency for me to acquire the right to live and work in a more stable country for the rest of my life. I support other people taking whatever action is best for them based on similar assumptions.

Here are some of the books I read that helped me make this decision:

Defying Hitler, by Sebastian Haffner
One Long Night: A Global History of Concentration Camps, by Andrea Pitzer
How Democracies Die, by Steven Levitsky and Daniel Ziblatt
The Rise and Fall of the Third Reich, by William L. Shirer
The Origins of Totalitarianism, by Hannah Arendt
Fascism, by Alan Cassels
The Anatomy of Fascism, by Robert O. Paxton
Antifa: The Antifascist Handbook, by Mark Bray

My thinking was also shaped by visiting World War II memorials and museums around the world, with particular emphasis on the Holocaust and the U.S. nuclear bombings of Hiroshima and Nagasaki. I have also learned a great deal from my Twitter list focusing on U.S. politics. [Update: fixed list link.]

Featured image CC BY P J Lambert https://flic.kr/p/t4sZaD

Why climate change and the decline of democracy are happening at the same time

A lot is going wrong at the same time right now: the U.S. is descending into kleptocracy at best (fascism at worst), the U.K. is self-destructing, and the climate change is accelerating.

Over the last few years, I’ve often wondered, “Why are so many bad things happening at the same time? Is it just coincidence?” So I read a lot of books, research, and articles from historians, political experts, and scientists to try to understand what was happening.

The answer is no, it is not a coincidence. It’s the result of petrobillionaires protecting their wealth and power for remainder of their expected lifetimes at the cost of the livability of the entire world.

What’s a petrobillionaire? A billionaire whose wealth derives in large part from the burning of oil, gas, and/or coal. This definition would include the surviving Koch brother, Mukesh Ambani, many Russian oligarchs, etc. Billionaires of any kind are, how can I say this politely, a “policy failure” at best. As individuals, they almost universally desire to hoard more wealth and power, without limit or practical motivation. Some of them want to be thought well of after they die and turn to “good works,” but they continue to distort and control the world through selective “philanthropic” giving.

But petrobillionaires are particularly bad, even for billionaires. Their most convenient route to increased wealth and power necessarily requires the continued acceleration of climate change. A shocking number of them literally do not care about anything that happens when they are dead, including what people think of them or what happens to their children. (Interestingly, long-lived corporations that built their fortunes in oil seem to be making moves towards changing their source of income and surviving longer into the future; corporations also want to survive but don’t have a predetermined limit on their lifetimes.)

Climate change is a global problem whose consequences will fall mainly on the poorest 6 or 7 billion people on the planet and the billions yet to be born. Fixing it requires concerted action across multiple governments, driven by demand from ordinary people who care about the environment and want a world they and their children can live in (unlike the petrobillionaires).

Petrobillionaires view concerted action to slow or reverse climate change as an existential threat to the only thing they care about: their personal wealth and power. What to do to protect themselves? Discourage international cooperation, weaken individual governments, and corrupt any government that is even mildly responsive to the will of the people. The oil and gas industry already greatly influenced many governments around the world before they started taking baby steps towards stopping climate change, but now petrobillionaires have a strong incentive to increase their interference.

One government already totally captured by petrobillionaires is that of Russia. For a surprisingly small expenditure of public tax dollars, Russia is corrupting and destroying the most powerful democratic governments in Europe and the U.S. via clever use of social media, bribes, flattery, kompromat, etc. For a mere $12.5 million a month, the Internet Research Agency spread disinformation that influenced the vote in the 2016 U.S. election. The same organization had plenty of resources to simultaneously sway the vote in the 2016 Brexit referendum, the results of which have sent the U.K. into an orgy of self-destruction. As a result, the U.S. has stopped even its minor efforts towards combatting climate change and the entire EU project is weakened. Russia is funding many other projects: a proxy war in Ukraine, the far-right party of Marine Le Pen in France (a mere $12.2 million loan), and a far-right MP in Germany, to name just a few of the ones we know about.

In the U.S., Russia’s efforts to weaken our government opened the door for our existing white supremacist movement to re-animate and intensify our peculiarly American form of racist fascism, something I have been extremely worried about. However, after Steve Bannon failed to consolidate his power and was kicked out of the White House, it seems clear that Russia would prefer an ordinary racist kleptocracy and white supremacists will have to settle for whatever cruelty Stephen Miller and Donald Trump can implement without going full fascist. This gives us more time to potentially reverse the decline of our democracy and makes it less likely we will self-destruct with the fury and violence of Nazi Germany (which could destroy nearly the entire world long before climate change has an opportunity to do so).

My current opinion as of September 2019 is that in the U.S. we have about a 5% chance of returning to or improving on our flawed democracy circa 2010. Based on my research, Elizabeth Warren is the presidential candidate most likely to achieve this goal post-Trump, which is why I’m currently donating to and volunteering for her campaign. Working with other Warren volunteers is a delight; they are almost uniformly wonderful, caring, enjoyable people. Even if our work is doomed, I am glad to be doomed with them.

So that’s how I understand the simultaneous decline of representative democracy and the acceleration of climate change: petrobillionaires who literally don’t care if the world burns as long as they can increase their wealth and power during their lifetimes, taking over, disabling, or corrupting every government that could plausibly fight climate change. I hope enough civilization is left to write the history of this time.

Featured image CC BY-NC-ND mrapplegate https://flic.kr/p/4C8FJQ

Why you shouldn’t trust people who support sexual predators

[CW: mention of child sexual abuse]

Should you trust people who support sexual predators? My answer is no. Here’s why:

Anyone who is ethically flexible enough to justify knowingly supporting a sexual predator is ethically flexible enough to justify harming the people who trust and support them.

This week’s news provides a useful case study.

After writing about how to avoid supporting sexual predators, I talked to some of the 250 people who signed a letter of support for Joi Ito to remain as head of MIT Media Lab. They signed this letter between August 26th and September 6th, when they were aware of the initial revelations that Ito and the ML had taken about $2 million from Jeffrey Epstein after his 2008 conviction for child sex offenses.

Here’s the dilemma these signatories were facing: Ito was powerful, and charming, and had inspired loyalty and support in them. The letter says, “We have experienced first-hand Joi’s integrity, and stand in testament to his overwhelmingly positive influence on our lives—and sincerely hope he remains our visionary director for many years to come.” When given evidence that Ito had knowingly supported a convicted serial child rapist, they chose to believe that there was some as-yet unknown explanation which would square with their image of Ito as a person of integrity and ethics. Others viewed taking Epstein’s money as some kind of moral imperative: the money was available, they could do good with it, no one was preventing them from taking it. They denied that Epstein accrued any advantage from the donations. Finally, many of the signatories also depend on Ito for a living; after all, as Upton Sinclair says, it is difficult to get a person to understand something when their salary depends upon their not understanding it.

These 250 people expected their public pledge of loyalty to be rewarded. Instead, on September 6th, we all learned that Ito and other ML staff had been deliberately covering up Epstein’s role in about $8 million in donations to the ML, in contravention of MIT’s explicit disqualification of Epstein as a donor. The article is filled with horrifying details, but most damning of all: Epstein visited the ML in 2015 to meet with Ito in person (a privilege accorded to him for his financial support). The women on the ML staff offered to help two extremely young women accompanying Epstein escape, fearing they were trafficked.

Ito knew Epstein was almost certainly still committing rape after 2008.

Needless to say, this not what the signatories of the letter of support expected. Less than 24 hours after this news broke, the number of signatories had dropped from 250 to 228, and this disclaimer was added: “This petition was drafted by students on August 26th, 2019, and signed by members of the broader Media Lab community in the days that followed, to show their support for Joi and his apology. Given when community members added their names to this petition, their signatures should not be read as continued support of Joi staying on as Media Lab Director following the most recent revelations in the September 6th New Yorker article by Ronan Farrow.”

What happened? This is a phenomenon I’ve seen before, from my time working in the Linux kernel community. It’s this: Every nasty horror show of an abuser is surrounded by a ring of charming enablers who mediate between the abuser and the rest of the world. They make the abuser’s actions more palatable, smooth over the disagreements, invent explanations: the abuser can’t help it, the abuser needs help, the abuser is doing more good than harm, the abuse isn’t real abuse, we’ll always have an abuser so might as well stick with the abuser we know, etc. And around the immediate circle of enablers is a wider circle of dozens and hundreds of kind, trusting, supportive people who believe, in spite of all the evidence, that keeping the abuser and their enablers in power is ethically justified, in some way they aren’t privileged to understand. They don’t fully understand why, but they trust the people in power and keep working on faith.

That first level of charming enabler surrounding the abuser is doing that work with full knowledge of how terrible the abuser is, and they are rationalizing their decision in some way. It might be pure self-interest, it might be in service of some supposed greater goal, it might be a deep psychological need to believe that the abuser can be reformed. Whatever it is, it is a rationalization, and they are daily acting in a way that the surrounding circle of kind, trusting people would consider wildly unethical.

Here’s the key: you can’t trust anyone in that inner circle of enablers. They are people who are ethically flexible enough to rationalize supporting an abuser. They can easily rationalize screwing over the kind people who trust them, as Ito did with the 250 signatories of a letter that said, “We are here for you, we support you, we will forever be grateful for your impact on our lives.” His supporters are finding out the hard way that this kind of devotion and love is only one-way.

I am lucky enough to be in a position where I can refuse to knowingly support sexual predators. I also refuse to associate with people who support sexual predators because I know I can’t trust them to act ethically. I encourage you to join me.

How to avoid supporting sexual predators

[TW: child sex abuse]

Recently, I received an email from a computer security company asking for more information on why I refuse to work with them. My reason? The company was founded by a registered child sex offender who still serves as its CTO, which I found out during my standard client research process.

My first reaction was, “Do I really need to explain why I won’t work with you???” but as I write this, we’re at the part of the Jeffrey Epstein news cycle where we are learning about the people in computer science who supported Epstein—after Epstein pleaded guilty to two counts of “procuring prostitution with a child under 18,” registered as a sex offender, and paid restitution to dozens of victims. As someone who outed her own father as a serial child molester, I can tell you that it is quite common for people to support and help known sexual predators in this way.

I would like to share how I actively avoid supporting sexual predators, as someone who provides diversity and inclusion training, mostly to software companies:

  1. When a new client approaches me, I find the names of the CEO, CTO, COO, board members, and founders—usually on the “About Us” or “Who We Are” or “Founders” page of the company’s web site. Crunchbase and LinkedIn are also useful for this step.
  2. For each of the CEO, CTO, COO, board members, and/or founders, I search their name plus “allegations,” “sexism,” “sexual assault,” “sexual harassment,” and “women.” I do this for the company name too.
  3. If I find out any executives, board members, or founders have been credibly accused of sexual harassment or assault, I refuse to work with that company.
  4. I look up the funders of the company on Crunchbase. If any of their funders are listed on Sexism and Racism in Venture Capital, I give the company extra scrutiny.
  5. If the company agreed to take funding from a firm (or person) after knowing the lead partner(s) were sexual harassers or predators, I refuse to work with that company.

If you don’t have time to do this personally, I recommend hiring or contracting with someone to do it for you.

That’s just part of my research process (I search for other terms, such as “racism”). This has saved me from agreeing to help make money for a sexual predator or harasser many times. Specifically, I’ve turned down 13 out of 303 potential clients for this reason, or about 4% of clients who approached me. To be sure, it has also cost me money—I’d estimate at least $50,000—but I’d like to believe that my reputation and conscience are worth more than that. If you’re not in a position where you can say no to supporting a sexual predator, you have my sympathy and respect, and I hope you can find a way out sooner or later.

Your research process will look different depending on your situation, but the key elements will be:

  1. Assume that sexual predators exist in your field and you don’t know who all of them are.
  2. When you are asked to work with or support someone new, do research to find out if they are a sexual predator.
  3. When you find out someone is probably a sexual predator, refuse to support them.

What do I do if, say, the CEO has been credibly accused of sexual harassment or assault but the company has taken appropriate steps to make amends and heal the harm done to the victims? I don’t know, because I can’t remember a potential client who did that. I’ve had plenty that published a non-apology, forced victims to sign NDAs for trivial sums of money, or (very rarely) fired the CEO but allowed them to keep all or most of their equity, board seat, voting rights, etc. That’s not enough, because the CEO hasn’t shown remorse, made amends, or removed themselves from positions of power.

I don’t think all sexual predators should be ostracized completely, but I do think everyone has a moral responsibility not to help known sexual predators back into positions of power and influence without strong evidence of reform. Power and influence are privileges which should only be granted to people who are unlikely to abuse them, not rights which certain people “deserve” as long as they claim to have reformed. Someone with a history of sexually predatory behavior should be assumed to be dangerous unless exhaustively proven otherwise. One sign of complete reform is that the former sexual predator will themselves avoid and reject situations in which power and access would make sexual abuse easy to resume.

In this specific case, the CTO of this company maintains a public web site which briefly and vaguely mentions the harm done to victims of sex abuse—and then devotes the majority of the text to passionately advocating for the repeal of sex offender registry laws because of the incredible harm they do to the health and happiness of convicted sex offenders. So, no, I don’t think he has changed meaningfully, he is not a safe person to be around, he should not be the CTO of a computer security company, and I should not help him gain more wealth.

Don’t be the person helping the sexual predator insinuate themself back into a position with easy access to victims. If your first instinct is to feel sorry for the powerful and predatory, you need to do some serious work on your sense of empathy. Plenty of people have shared what it’s like to be the victim of sexual harassment and assault; go read their stories and try to imagine the suffering they’ve been through. Then compare that to the suffering of people who occasionally experience moderate consequences for sexually abusing people with less power than themselves. I hope you will adjust your empathy accordingly.

Goth fashion tips for Ehlers-Danlos Syndrome

A woman wearing a dramatic black hooded jacket typing on a laptop
Skingraft hoodie, INC shirt, Fisherman’s Wharf fingerless gloves

My ideal style could perhaps be best described as “goth chic”—a lot of structured black somewhere on the border between couture and business casual—but because I have Ehlers-Danlos Syndrome, I more often end up wearing “sport goth”: a lot of stretchy black layers in washable fabrics with flat shoes. With great effort, I’ve nudged my style back towards “goth chic,” at least on good days. Enough people have asked me about my gear that I figured I’d share what I’ve learned with other EDS goths (or people who just like being comfortable and also wearing a lot of black).

Here are the constraints I’m operating under:

  • Flat shoes with thin soles to prevent ankle sprains and foot and back pain
  • Stretchy/soft shoes without pressure points to prevent blisters on soft skin
  • Can’t show sweat because POTS causes excessive sweating, also I walk a lot
  • Layers because POTS, walking, and San Francisco weather means I need to adjust my temperature a lot
  • Little or no weight on shoulders due to hypermobile shoulders
  • No tight clothes on abdomen due to pain (many EDS folks don’t have this problem but I do)
  • Soft fabric only touching skin due to sensitive easily irritated skin
  • Warm wrists to prevent hands from losing circulation due to Reynaud’s or POTS

On the other hand, I have a few things that make fashion easier for me. For starters, I can afford a four-figure annual clothing budget. I still shop a lot at thrift stores, discount stores like Ross, or discount versions of more expensive stores like Nordstrom Rack but I can afford a few expensive pieces at full price. Many of the items on this page can be found used on Poshmark, eBay, and other online used clothing marketplaces. I also recommend doing the math for “cost per wear” to figure out if you would save money if you wore a more expensive but more durable piece for a longer period of time. I usually keep clothing and shoes for several years and repair as necessary.

I currently fit within the “standard” size ranges of most clothing and shoe brands, but many of the brands I recommend here have a wider range of sizes. I’ve included the size range where relevant.

Finally, as a cis woman with an extremely femme body type, I can wear a wide range of masculine and feminine styles without being hassled in public for being gender-nonconforming (I still get hassled in public for being a woman, yay). Most of the links here are to women’s styles, but many brands also have men’s styles. (None of these brands have unisex styles that I know of.)

Shoes and socks

Shoes are my favorite part of fashion! I spend much more money on shoes than I used to because more expensive shoes are less likely to give me blisters. If I resole/reheel/polish them regularly, they can last for several years instead of a few months, so they cost the same per wear. Functional shoes are notoriously hard for EDS people to find, so the less often I have to search for new shoes, the better. I nearly always wear my shoes until they can no longer be repaired. If this post does nothing other than convince you that it is economical and wise to spend more money on shoes, I have succeeded.

Woman wearing two coats and holding two rolling bags
Via Spiga trench, Mossimo hoodie, VANELi flats, Aimee Kestenberg rolling laptop bag, Travelpro rolling bag

Smartwool black socks – My poor tender feet need cushiony socks that don’t sag or rub. Smartwool socks are expensive but last forever, and you can get them in 100% black so that you can wash them with your black clothes without covering them in little white balls. I wear mostly the men’s Walk Light Crew and City Slicker, with occasional women’s Hide and Seek No Show.

Skechers Cleo flats – These are a line of flats in a stretchy sweater-like material. The heel can be a little scratchy, but I sewed ribbon over the seam and it was fine. The BOBS line of Skechers is also extremely comfortable. Sizes 5 – 11.

VANELi flats – The sportier versions of these shoes are obscenely comfortable and also on the higher end of fashion. I wore my first pair until they had holes in the soles, and then I kept wearing them another year. I’m currently wearing out this pair. You can get them majorly discounted at DSW and similar places. Sizes 5 – 12.

Stuart Weitzman 5050 boots – These over-the-knee boots are the crown jewel of any EDS goth wardrobe. First, they are almost totally flat and roomy in the toe. Second, the elastic in the boot shaft acts like compression socks, helping with POTS. Third, they look amazing. Charlize Theron wore them in “Atomic Blonde” while performing martial arts. Angelina Jolie wears these in real life. The downside is the price, but there is absolutely no reason to pay full price. I regularly find them in Saks Off 5th for 30% off. Also, they last forever: with reheeling, my first pair lasted around three years of heavy use. Stuart Weitzman makes several other flat boots with elastic shafts which are also worth checking out, but they have been making the 5050 for around 25 years so this style should always be available. Sizes 4 – 12, runs about a half size large.

Pants/leggings/skirts

A woman wearing black leggings and a black sweater
Patty Boutik sweater, Demobaza leggings, VANELi flats

Satina high-waisted leggings – I wear these extremely cheap leggings probably five days a week under skirts or dresses. Available in two sizes, S – L and XL – XXXL. If you can wear tight clothing, you might want to check out the Spanx line of leggings (e.g. the Moto Legging) which I would totally wear if I could.

Toad & Co. Women’s Chaka skirt – I wear this skirt probably three days a week. Ridiculously comfortable and only middling expensive. Sizes XS – L.

NYDJ jeans/leggings – These are pushing it for me in terms of tightness, but I can wear them if I’m standing or walking most of the day. Expensive, but they look professional and last forever. Sizes 00 – 28, including petites, and  they run at least a size large.

Demobaza leggings – The leggings made mostly of stretch material are amazingly comfortable, but also obscenely expensive. They also last forever. Sizes XS – L.

Tops

Patty Boutik – This strange little label makes comfortable tops with long long sleeves and long long bodies, and it keeps making the same styles for years. Unfortunately, they tend to sell out of the solid black versions of my favorite tops on a regular basis. I order two or three of my favorite styles whenever they are in stock as they are reasonably cheap. I’ve been wearing the 3/4 sleeve boat neck shirt at least once a week for about 5 years now. Sizes XS – XL, tend to run a size small.

14th and Union – This label makes very simple pieces out of the most comfortable fabrics I’ve ever worn for not very much money. I wear this turtleneck long sleeve tee about once a week. I also like their skirts. Sizes XS to XL, standard and petite.

Macy’s INC – This label is a reliable source of stretchy black clothing at Macy’s prices. It often edges towards club wear but keeps the simplicity I prefer.

Coats

Mossimo hoodie – Ugh, I love this thing. It’s the perfect cheap fashion staple. I often wear it underneath other coats. Not sure about sizes since it is only available on resale sites.

Skingraft Royal Hoodie – A vastly more expensive version of the black hoodie, but still comfortable, stretchy, and washable. And oh so dramatic. Sizes XS – L.

3/4 length hooded black trench coat – Really any brand will do, but I’ve mostly recently worn out a Calvin Klein and am currently wearing a Via Spiga.

Accessories

A woman wearing all black with a fanny pack
Mossimo hoodie, Toad & Co. skirt, T Tahari fanny pack, Satina leggings, VANELi flats

Fingerless gloves – The cheaper, the better! I buy these from the tourist shops at Fisherman’s Wharf in San Francisco for under $10. I am considering these gloves from Demobaza.

Medline folding cane – Another cheap fashion staple for the EDS goth! Sturdy, adjustable, folding black cane with clean sleek lines.

T Tahari Logo Fanny Pack – I stopped being able to carry a purse right about the time fanny packs came back into style! Ross currently has an entire fanny pack section, most of which are under $13. If I’m using a backpack or the rolling laptop bag, I usually keep my wallet, phone, keys, and lipstick in the fanny pack for easy access.

Duluth Child’s Pack, Envelope style – A bit expensive, but another simple fashion staple. I used to carry the larger roll-top canvas backpack until I realized I was packing it full of stuff and aggravating my shoulders. The child’s pack barely fits a small laptop and a few accessories.

Aimee Kestenberg rolling laptop bag – For the days when I need more than I can fit in my tiny backpack and fanny pack. It has a strap to fit on to the handle of a rolling luggage bag, which is great for air travel.

Apple Watch – The easiest way to diagnose POTS! (Look up “poor man’s tilt table test.”) A great way to track your heart rate and your exercise, two things I am very focused on as someone with EDS. When your first watch band wears out, go ahead and buy a random cheap one off the Internet.

That’s my EDS goth fashion tips! If you have more, please share them in the comments.

Signs that you might be an advice columnist

A black arrow outline with four bright colors in horizontal stripes insideI started a new advice column! It is called Dear Ally Skills Teacher (“Dear Ally” for short), where I answer questions about how to support people with less power and privilege. If you are the person who is always answering questions about diversity and inclusion at work, and you’re tired and overworked and not getting any benefit out of it, you can tell people to send their questions to me instead.

I agonized over whether to start an ally skills advice column for about a year, and now that I’m writing it, I can’t believe I waited so long. Y’all, I LOVE giving advice, and I love even more when people tell me my advice helped them. And since I’ve taught more than 100 Ally Skills Workshops, I have answers to a lot of questions.

I put together this handy list of signs you might be an advice columnist:

In about another year, I hope to write up my advice on becoming an advice columnist, but for now, the best advice I’ve gotten is to focus on getting questions, since that’s what most advice columnists struggle with when starting out. (There was that time Nicole Cliffe was getting hardly any questions for Care and Feeding and it turned out she was advertising the wrong email address…)

If you want to help, you can:

  • Send me a question!
  • Tell other people to send their questions to Dear Ally
  • Sign up to get Dear Ally columns via email
  • Ask me to give a (free) talk about ally skills at your tech company, in person or by video
  • Share the link on Slack or mailing lists
  • Share columns you like on social media
  • Suggest podcasts I should appear on (tech audience with a social justice bent)

I am looking forward to this fun experiment and I hope you enjoy Dear Ally Skills Teacher!

Iron and cheese: how I used lactoferrin to treat iron overload (part 3)

This is a three-part series about how getting black spots on my teeth helped me find out I had an iron disorder, and how I found and tested a novel treatment for it. In part 1, we learned that the black spots were likely caused by iron overload, a condition in which the body absorbs so much iron that it begins attacking its own tissues. In part 2, we learned about the symptoms and causes of iron overload, and how to treat it using blood donation. We also learned that I had iron overload, but that another medical condition, hypermobile Ehlers-Danlos Syndrome (hEDS), made it hard for me to donate blood.

Disclaimer: this is not medical advice. Talk to your doctor before making medical decisions.

Can lactoferrin treat iron overload?

Rendering of a lactoferrin protein
Could lactoferrin lower my iron levels?

I was steeling myself to go through 6 – 12 weeks of fatigue and fainting while I donated blood to lower my iron levels, when I remembered what got me into this mess in the first place: taking a lactoferrin supplement, a protein found in milk. Lactoferrin was binding up the free iron in my saliva and depositing it on my teeth, causing black spots. Was it possible that I could use lactoferrin to bind and remove the excess iron from my body, without donating blood?

My theory was that oral lactoferrin would bind to free iron in the intestines and then depart my body in the usual manner of digested food (ahem). I also felt much more energetic and cheerful when I was taking lactoferrin (probably because it bound up the excess free iron in my body) and I wanted to keep feeling good. If lactoferrin lowered my iron levels, it would be a win—win solution.

Apolactoferrin vs. holo-lactoferrin

A wedge of Swiss cheese
Don’t forget, cheese contains lactoferrin too!

The first question I had was whether lactoferrin raised iron levels or lowered them, and the answer turns out to be, “It depends.” First, there are two kinds of lactoferrin: apolactoferrin and holo-lactoferrin. Remember, one of the things lactoferrin does is to bind to an iron atom. Lactoferrin that isn’t bound to iron is called apolactoferrin, and lactoferrin bound to iron is called holo-lactoferrin. The two forms can have very different effects.

Holo-lactoferrin (with iron)

Several studies on treating anemia in pregnant people used lactoferrin that was partially bound to iron (30% in one study). It’s not surprising that taking a compound containing iron increased iron levels. Further analysis suggested that the majority of the benefit was not even from the iron bound to the lactoferrin, but that the lactoferrin just mobilized the iron stuck in other parts of the body to the bloodstream, where it could be used to make more red blood cells. The people in these studies may have had more of problem of moving iron around their body rather than a lack of stored iron.

Apolactoferrin (no iron)

Apolactoferrin, on the other hand, is not bound to iron, so it would not add any iron. It would still mobilize iron out of storage and bind to it; the question was what my body would do with it after that. I found studies about using high doses of lactoferrin to help treat hepatitis C, but they didn’t measure iron levels. The only hint I could find was a video from a functional medicine practitioner, Chris Kesser, which mentioned in passing that lactoferrin might work to reduce iron levels. In summary, it seemed likely that high doses of apolactoferrin would lower iron levels but no one had run a study to test it.

Most commercial supplements are apolactoferrin

My next question was, what kind of lactoferrin had I been taking? Had I accidentally given myself iron overload by unknowingly ingesting iron in holo-lactoferrin? I emailed customer support at Jarrow, who told me that, “Virtually all commercial lactoferrin supplements on the market are apolactoferrin,” including the one I was taking.

Update: Taking apolactoferrin with or without food

[Updated 20 February 2020] A reader wrote in to say that a nutritionist advised them that taking apolactoferrin with iron-containing food would bind up the iron in the food and make it more available to the body, while taking apolactoferrin without food would cause it to pull iron out of the body. If this is true, then it would matter how much apolactoferrin and iron you were taking, both total and relative to each other. My guess is that if you are already avoiding eating a lot of iron, it won’t matter if you take the apolactoferrin with or without food.

Apolactoferrin as a candidate to lower iron levels

After my research, I knew that apolactoferrin would mobilize stored iron, and it would not introduce new iron to my body, and it would bind to any free iron it encountered. Given that the alternative was feeling tired and faint for a couple of months, it seemed worth a try! I also wanted to help find an option for the people I mentioned in part 2, who had mild iron overload but couldn’t donate blood and also couldn’t get a doctor’s prescription for therapeutic phlebotomy. If my experiment didn’t work, that was okay—my iron levels were low enough that I wasn’t going to do any permanent damage if I waited a year to treat them in the usual way. And frankly, I was curious and excited to find out if lactoferrin would lower iron levels because I am a giant nerd and I love science.

I talked to my doctor and decided to take 750 mg of lactoferrin a day. We would test my iron levels again in a few months.

Testing apolactoferrin to lower iron levels

About two months after I resumed taking lactoferrin, I noticed that my lips seemed to be getting paler. “I guess I’m getting old,” I thought, “This must be why lipstick was invented.” A couple of weeks later, I noticed that my lips were almost white. I had also started feeling tired again, but in a totally new and different way than I’d ever felt tired before. Finally it occurred to me: I was having the symptoms of anemia!

I scheduled my second iron panel, and the results came back: I was indeed now slightly anemic, and all my other iron levels were in normal range, with 132 ng/mL serum ferritin and 29% iron saturation. I had started at 203 ng/mL serum ferritin and 58% iron saturation, so in only two months I’d lowered my serum ferritin by 70 ng/mL, and my iron saturation had dropped nearly 30%. It was working!

From iron overload to anemia in two months

A pale woman in 18th century dress leaning back on a pillow surrounded by worried people
An interesting pallor… or anemia of inflammation?

The good news is that the lactoferrin seemed to be really good at removing iron from my body! The bad news is that I was removing iron from my body too quickly, and my body wasn’t able to make enough new blood cells.

It turns out that this sometimes happens naturally when someone has a chronic disease, and it’s called “anemia of inflammation.” It’s thought that the body is trying to deprive pathogens of the iron they need to grow by temporarily reducing free iron. This also makes the iron less available to make new red blood cells, which results in anemia. (Apparently there’s a reason that chronically ill people in Victorian novels are always pale and out of breath.)

Fine-tuning the lactoferrin dose

Even though I was currently anemic, my serum ferritin showed that I still had plenty of stored iron squirreled away in various parts of my body, and I wanted to follow the advice from the Iron Disorders Institute to lower my serum ferritin to below 75 ng/mL before going into maintenance phase. I lowered my dose of lactoferrin from 750 mg/day to 250 mg/day, and within a couple of weeks my fatigue went away and my lips turned pink again.

Normal iron levels after 11 months

At 4 months, my iron levels had rebounded to slightly above normal and at 8 months, they were still slightly above normal, at 179 ng/mL ferritin and 51% iron saturation. It seemed that 250 mg/day of lactoferrin would maintain my iron levels but not lower them. I increased the dose to 500 mg/day of lactoferrin. After 7 months at this dose, and 11 months after my first iron panel, I finally achieved 75 ng/mL of iron and 38% iron saturation, firmly in the normal range and down from my start of 203 ng/mL and 58% iron saturation. It worked: lactoferrin lowered my iron levels!

Apolactoferrin lowered my iron levels

A large gold trophy with a star emblazoned on it
My hypothesis was correct!

I succeeded in treating my mild iron overload without donating blood by taking 250 – 750 mg/day of oral apolactoferrin, the form of lactoferrin not bound to iron. Over a period of 11 months, I lowered my serum ferritin from 203 ng/mL to 75 ng/mL. My first iron panel was not until 3 months after I started taking lactoferrin, so there’s reason to suspect that my starting serum ferritin level was more like 275 ng/mL.

I did not lose any significant amount of blood during that time, other than a small amount removed for blood tests. I also stopped taking lactoferrin for a week before each iron panel because I wasn’t sure whether it would affect the test results. I’m continuing to take 250 mg/day of lactoferrin, since it has many other potential benefits and appears to maintain my iron levels at that dose. I will continue checking my iron levels once or twice a year.

I still don’t know what caused my mild iron overload. I may have hereditary hemochromatosis caused by an as-yet unidentified genetic mutation. Perhaps some odd interaction between my hEDS and my high iron diet caused me to absorb more iron than usual. Maybe I was ingesting some other source of iron without knowing it. Who knows? What I do know is that I feel better with lower iron levels, and I didn’t have to donate blood to get there!

How you can stop iron overload deaths

A drawing of heart, liver, pancreas, and brain showing damaged spots
Don’t let iron destroy your organs

I wrote up my experience with iron overload and lactoferrin because I thought it was an interesting medical mystery, but also because I want to spread the word about iron overload. Millions of people around the world are at risk of developing iron overload and many people die from it, but few doctors can recognize the symptoms or are willing to run the (cheap, simple, easy) iron panel test to check for it.

If you or someone you know is suffering from iron overload symptoms such as fatigue, joint pain, or hormone problems, you might consider asking for an iron panel (covered by most health care systems). And if you eat a lot of cheese, have black spots on your teeth, and get an iron panel, please think about sending Dr. Mesonjesi an email letting him know the results. (He was super nice—and funny—when I emailed him thanking him for his letter proposing a link between lactoferrin and black tooth spots.)

I’d love to see a formal study on the use of oral apolactoferrin to reduce mild iron overload to see if it works for more people. My experience could just be a fluke, but lactoferrin could also be an easy and cheap alternative to therapeutic phlebotomy or the more toxic iron chelating drugs. It might also be useful in combination with therapeutic phlebotomy to lower iron even more quickly, since it could both mobilize iron out of storage and make it available for building more blood cells more quickly.

If you talk to your doctor and try to lower your iron levels using apolactoferrin, please email me and let me know how it went!

Still have questions? There is now a part 4 answering frequently asked questions!

Iron and cheese: how I used lactoferrin to treat iron overload (part 2)

This is a three-part series about how getting black spots on my teeth helped me find out I had an iron disorder, and how I found and tested a novel treatment for it. In part 1, we learned that the black spots on my teeth were likely caused by iron overload, a condition in which the body absorbs so much iron it begins attacking its own tissues, and that iron overload is most often caused by a common genetic problem called hereditary hemochromatosis.

Disclaimer: this is not medical advice. Talk to your doctor before making medical decisions.

Genetic tests for hereditary hemochromatosis

A large blob with a DNA double helix twisted through it
DNA tests are cool! CC BY-SA Thomas Splettstoesser

The next step in my iron overload journey was to see if I had the genes for HFE hereditary hemochromatosis (HFE HH). I found a copy of my 23andMe report and looked up the line for HFE HH, which said “Variant present,” in scary red text.

What the heck did “Variant present” mean? I knew in general that for a lot of genetic diseases, I could be a “carrier”—someone who didn’t have the disease but could give it to my children if their other parent was also a carrier—or I could have the disease myself. But “Variant present” didn’t tell me which one that was. (Now I see why the FDA wanted 23andMe to run their genetic tests through the FDA approval process before selling them to people!)

Fortunately, I had a copy of my raw 23andMe genetic sequencing data, so I could use this handy guide to known HFE mutations created by Stephen Cobb to find out what “Variant present” meant. But first, I had to get a better understanding of the genetics of HFE hereditary hemochromatosis.

The genetics of HFE hereditary hemochromatosis

Most people with HFE HH are homozygous (have two copies) of C282Y mutation in the HFE gene. Some people with HFE HH have one copy of C282Y and one copy of a different HFE mutation, the most common of which are named H63D and S65C. And 10 – 15% of HH cases are in people with one or zero copies of C282Y, including some with “wild-type” HFE genes with no mutations at all.

Using Stephen Cobb’s guide and my raw 23andMe data, I figured out that I am heterozygous (have one copy) for the extremely common and mostly harmless HFE mutation H63D, which doesn’t usually produce iron overload even in people who have two copies of it (although exceptions exist). I had zero copies of the C282Y gene. My HFE genes were not normal, but they also didn’t say that I had the most common genetic cause of HH. I might still have HH, but at least I hadn’t ignored a genetic test telling me I was at serious risk for developing iron overload!

Drawing of a cast iron frying pan
Cast iron cookware is a treatment for anemia

While I was researching this, I realized that if I did have HH, it would make perfect sense that I had developed iron overload now. First, I had stopped losing blood through menstruation a few years ago. Second, my dietary iron had gone way up recently: I moved in with my partner, who loved to cook for me and especially loved to cook beef (an excellent source of iron). He also cooked dinner almost every night in his favorite cast iron pan (a known treatment for anemia). If I had HH, this is exactly when I would expect it to start to show up. I decided to get tested for iron overload.

Diagnosing iron overload

The first step in diagnosing iron overload is running an iron panel, which is a collection of blood tests that measures three important things about your blood:

  1. Serum iron: how much iron is floating around in your blood, bound or unbound
  2. Total iron-binding capacity: how much iron can be bound by the amount of transferrin, an iron-binding protein. in your blood
  3. Serum ferritin: how much ferritin, an iron-storing protein, is in your blood

Two useful numbers are derived from these measurements:

  1. Iron saturation or transferrin saturation: what percentage of the iron-binding protein transferrin in your blood is already bound to iron, which is serum iron divided by total iron-binding capacity
  2. Unsaturated iron-binding capacity: how much iron-binding capacity in your blood is unused, which is the total iron-binding capacity minus the serum iron

Remember, free iron is toxic but your body also needs iron to live. You want enough bound iron to make blood cells and other things, but as little free iron as possible. That means you want a fair bit of unused iron-binding proteins floating around your blood to catch any free iron floating around.

Getting an iron panel

A photograph of blood cells through a microscope
A CBC counts blood cells, but does not measure iron levels

I assumed I’d had an iron panel before, and was surprised to learn that I’d never had one in my life! Doctors rarely order an iron panel, even though it is a cheap and easy test. Doctors often run the CBC (Complete Blood Count) test, which sounds like it would include an iron panel, but it does not. The CBC can tell you if you have anemia but not iron overload.

Most of the HH awareness websites have sections devoted to how to talk your doctor into ordering this cheap, simple, potentially life-saving test, but it’s so hard to get a doctor to authorize an iron panel that there is now a market for direct-to-consumer iron panels. For example, the Iron Disorders Institute now offers an iron panel test that patients in most parts of the U.S. can order online for about $130 (most most insurance providers or national health services are cheaper—if you can get your doctor to order it).

I can confirm the reluctance of doctors to order an iron panel firsthand. Unfortunately, my usual primary care doctor went on vacation just when I wanted this test, so I made an appointment with a random doctor at OneMedical. It took me about 20 minutes to argue the doctor into ordering an iron panel, even with the evidence of the black spots, the paper from the Albanian dentist linking the black spots and the lactoferrin to high iron levels, and the fatigue that lifted when I took lactoferrin. I went to get my blood drawn, and waited for the results of my iron panel.

Interpreting iron panel results

3D model of a folded ferritin protein showing a hole in the center where the iron atom goes
Ferritin molecule

The two most important results from the iron panel for diagnosing iron overload are the iron saturation and the serum ferritin. Iron saturation shows how much transferrin, the iron-binding protein that moves iron around the body, is bound to iron. Ferritin is a different iron-binding protein the body uses to store iron long-term. Ferritin levels in the blood usually (but not always) increase along with the total amount of iron stored in the body.

If both ferritin and iron saturation are high, then that strongly suggests iron overload. Both ferritin and iron saturation sometimes increase for reasons other than iron overload, such as injury, illness, or diet. But when both ferritin and iron saturation are high, and stay that way after retesting, it’s likely that iron overload is the cause.

Normal ranges of ferritin and iron saturation

What levels of ferritin and iron saturation suggest iron overload? Ha ha, good question! Different medical authorities have wildly different “normal” ranges for ferritin (15 – 500 ng/mL), and the ranges for iron saturation vary a lot too (25% – 60%). When it comes to ferritin, it’s extremely unusual to have a part of the blood whose normal range varies by more than 10x. Several researchers suggest that Western diets tend to produce iron overload, and as a result the upper end of the “normal” ranges are actually unhealthy.

After reading the scientific literature, I now have very strong opinions about the acceptable upper limit of serum ferritin. That’s because serum ferritin levels greater than 1000 ng/mL in people who have HH is a strong indicator of liver cirrhosis. It gets worse: people with HH who develop liver cirrhosis have a 30% chance of developing liver cancer. (!!!) Sometimes liver damage can occur at much lower ferritin levels. There’s also no health or performance advantage to serum ferritin levels above 75 – 100 ng/mL. After reading all the relevant papers, my personal opinion is that I agree with the Iron Disorders Institute guidelines of of 50 – 150 ng/mL for serum ferritin and 25% – 35% for iron saturation.

My iron panel results

After a few days, my iron panel results came back with the classic profile of iron overload. Every single measurement was out of normal range, but not by much. At 203 ng/mL serum ferritin and 58% iron saturation, I caught the iron overload early, before it caused any serious damage.

The OneMedical doctor who ordered the iron panel didn’t follow up with me about treatment after my abnormal results. Fortunately, my regular doctor was back from vacation, and was delighted to see that my hunch about iron overload had paid off. We started talking about how to lower my iron levels.

Treating iron overload with phlebotomy

A plastic medical fluids bag filled with a pint of dark red blood
Imagine losing this much blood twice a week! CC BY-SA 4.0 Vegasjon

The standard way to lower iron levels is therapeutic phlebotomy—basically, donating blood, except a lot more often than usual. Normally, people in the U.S. are only allowed to give blood once every eight weeks, but people with extreme iron overload may give up to 500 cc (about a pint) of blood TWICE a week! I was astonished to learn that some people can make a pint of new blood every seven days (!!!) if they have enough stored iron in their bodies.

How many blood donations does it take to get iron levels back to safe levels? Well, each 500 cc phlebotomy removes about 200 – 250 mg of iron and lowers serum ferritin by about 30 ng/mL. (A kind of blood donation that only takes out the red blood cells, DRCA, removes around twice as much iron with each donation.) 250 mg might seem like a lot of iron (it’s about the same amount that a newborn baby contains), but a person with iron overload can have as much as 35 grams of excess iron stored in their body. That means up to 175 phlebotomies of 500cc each—about one and half years of twice weekly phlebotomies. People with serum ferritin in my range (200 ng/mL) are advised to give blood every two weeks until ferritin drops to 25 ng/mL, which would probably take 6 donations and remove about 1.5 grams of iron.

The problem with phlebotomy

However, therapeutic phlebotomy doesn’t work for everyone. For example, it might be difficult for people who have:

  • Severe needle phobia
  • Difficult veins (small, rolling, scarred, etc.)
  • Fainting, intense pain, or other bad reactions to phlebotomy
  • Both iron overload AND anemia, which happens with repeated transfusions and a few other conditions
  • No access to therapeutic phlebotomy

The last point can happen when someone has no access to medical care, but also if their medical provider has an inappropriately high “normal” serum ferritin range. For example, the UK’s National Health Service (NHS) considers ferritin normal up to 400 ng/mL, when the World Health Organization (WHO) recommends 200 ng/mL for non-menstruating people and 150 ng/mL for menstruating people. In my research, I found two people who said they had symptoms of iron overload, but could not get therapeutic phlebotomy because their doctor didn’t think their iron level was high enough. They could not donate blood either: one was disqualified from donating blood for life after a false negative on a screening test, and another had a rare blood type that the blood bank refused to take, since they would almost certainly throw the blood away unused. Strangely, most people are not too keen on self-administered blood-letting.

I was personally leery of phlebotomy because I have postural orthostatic tachycardia syndrome (POTS) as a result of my hypermobile EDS. POTS means that my heart rate goes up too much when I stand up, which makes me feel faint, sick, and occasionally start to black out. POTS gets worse when blood volume drops, as in blood donation.

I did the math and calculated that I’d probably need at least 3 DCRA donations, or 6 regular donations. Also, people undergoing therapeutic phlebotomy often complain about feeling crushing fatigue after the second or third phlebotomy. Between the fatigue I already had and the POTS, I wasn’t thrilled about feeling miserable for 6 – 12 weeks.

The only mainstream alternative to therapeutic phlebotomy is iron chelation therapy—administering substances that bind to iron and remove it from the body. But the standard drugs are expensive and incredibly toxic: side effects included loss of hearing and kidney failure.

At this point, it looked like I had no choice but to risk passing out in some poor phlebotomist’s arms. Did I have any other options?

To be continued…

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