Almost 20 years ago, I put my name in the National Marrow Donor Program's registry. It was easy - I gave a little blood and my contact info, basically. As I did it, I hoped I'd never need a donor and that I'd never be called to donate. I was afraid of having bone marrow drawn.
But I knew being on the registry is important, so I put my name down and gave the blood. I had the inside scoop on the NMDP because my mom helped start it in the '80s. I watched her travel the world to set up registries in minority communities. She went to Oakland, Calif., and Japan and Europe to engage people in a small, selfless act. Get on the registry, possibly save a life.
Because of her, I know that it's especially important for mixed people to be on the list. We're rare, which means, if we need stem cells (that's what bone marrow is all about - stem cells) we are probably screwed. Here's the science:
If you're mixed, especially a weird mix like Jewish, Native American, Black and White, your chances of finding an HLA-matching stem cell donor are really small. Like, write your will and complete your bucket list small. Because stem cells aren't like blood type, where there are only a few options and lots of donors. It doesn't just take another person with A+ blood. In fact, blood type has nothing to do with it. It's way more complex and much more based in your genetic make up.
Understanding this, kind of, I got on the list and forgot about it.
20 years later, I get an email from Be the Match. I thought it was a hoax. I promptly forwarded the email to my mom and asked her to check it out with her old National Marrow Donor Program people. Two days later, I got a reply. It was real. Not a joke. Someone needed a donation and I might a match.
Holy sh*t.
I don't usually swear online but I'm overwhelmed. As I filled out the official health form, it hit me: Somewhere, a 3-year-old girl with aplastic anemia needs a donor and I might be the one to save her life.
I imagined that little girl's parents. The doctor telling Ms. Washington and Mr. Levine that finding a match for little Unique Levine was going to be tough to impossible. The doc may have already started running through their other options, like having another child in the hopes that one will be healthy and a be a match (odds: 25% for siblings). The parents have been steeling their hearts, maybe holding hands, maybe praying, maybe slowly giving up hope and then... a possible match. Me, a woman ~40 years older than their modern, unusually mixed child and yet of the same background. And, because of so many twists of fate, I'm on the Be the Match list and still use the email I created 20+ years ago.
Today, I don't know if I'll be chosen. There's still tests to be done on my old sample to confirm that I really am a match. I hope the result is yes. I don't want to get bone marrow drawn but I hope I'm a match because being mixed is a gift and, in this case, it's the gift that keeps on giving.
Showing posts with label mixed people health concerns. Show all posts
Showing posts with label mixed people health concerns. Show all posts
Multiracial health issues Part 2
Fifteen years ago, I was at a party in a typically dark club. Which is why it surprised me when a woman, maybe five years older than me and my same complexion, walked across the room and said, "If I had freckles like yours, I'd be unstoppable."
It was weird. I was surprised because:
Melasma is hyper-pigmentation of the skin on the face. It is most common with women of color. It often shows up when women are pregnant - hence its nickname "the mask of pregnancy." This is so common, in fact, that when I met up with a male friend of mine who hadn't seen me in a few years, the second thing he said was, "Serene, are you pregnant?" I had acquired the same facial freckling as his pregnant wife. The only upside to melasma, and this is a stretch, is that it tends to be symmetrical. So, giant freckle blob one cheek equals giant freckle blob on the other.
My blobs are above my lips, above my eye brows and on my cheek bones. That's a lot of blobbing. I can no longer forget that I have freckles because the blobs are extremely sensitive. Even 15 minutes in the sun, without sunblock, can turn them into coffee stains, swiftly spreading across my face.
I worry about the blobs because both my mom and her mom had skin cancer. I have seen multiple dermatologists. The derms run their fingers across the blobs and tell me that, so far, I'm ok. They suggest creams and retinols. They insist on sunblock and recommend hats. They do not recommend lasers or lights that White women use to beam away this problem because my naturally tan skin could respond by scarring. That would be even worse.
The best treatment would have been knowing 25 years ago that, as a biracial woman, I was more likely to end up with melasma. If I had known, I like to think I would have been more diligent back when my freckles when cute. More sunblock and hats, less hormonal birth control, which can make melasma appear. Maybe I just would have appreciated what I had (or didn't have) 15 years ago, when that woman surprised me in the club.
It was weird. I was surprised because:
- I used to forget that I have freckles (the past tense is deliberate and will lead to my point)
- I certainly didn't think they could be seen from far away, in the dark
- This woman also had freckles; they were big drops of molasses on her cafe au lait skin
Melasma is hyper-pigmentation of the skin on the face. It is most common with women of color. It often shows up when women are pregnant - hence its nickname "the mask of pregnancy." This is so common, in fact, that when I met up with a male friend of mine who hadn't seen me in a few years, the second thing he said was, "Serene, are you pregnant?" I had acquired the same facial freckling as his pregnant wife. The only upside to melasma, and this is a stretch, is that it tends to be symmetrical. So, giant freckle blob one cheek equals giant freckle blob on the other.
My blobs are above my lips, above my eye brows and on my cheek bones. That's a lot of blobbing. I can no longer forget that I have freckles because the blobs are extremely sensitive. Even 15 minutes in the sun, without sunblock, can turn them into coffee stains, swiftly spreading across my face.
I worry about the blobs because both my mom and her mom had skin cancer. I have seen multiple dermatologists. The derms run their fingers across the blobs and tell me that, so far, I'm ok. They suggest creams and retinols. They insist on sunblock and recommend hats. They do not recommend lasers or lights that White women use to beam away this problem because my naturally tan skin could respond by scarring. That would be even worse.
The best treatment would have been knowing 25 years ago that, as a biracial woman, I was more likely to end up with melasma. If I had known, I like to think I would have been more diligent back when my freckles when cute. More sunblock and hats, less hormonal birth control, which can make melasma appear. Maybe I just would have appreciated what I had (or didn't have) 15 years ago, when that woman surprised me in the club.
Multiracial health issues Part 1
I used to work for a stem cell bank. Yep, we collected, stored and released the cells that are the root of the human blood and immune systems. It was cool because using stem cells to treat diseases works. Not just in the lab. Not just in Germany or China. Here and now, stem cells are saving lives. Like I said, cool.
But here's the thing, if you're mixed, like me, and you have a health issue that could be treated with stem cells, you're probably screwed. And by screwed, I mean, get your affairs in order because the odds of finding a match are slim. Unless, of course, you have full-blooded siblings who are your exact same mixture. Then, you're in the double-digit percentile of finding a match. Phew!
Without those potentially matching siblings, your odds go up and down, based on how common your mixture is. For example, if you're "mixed" German and Irish (I'm being nice; everyone's heritage is sacred, even if it's ordinary). In America, the banks have LOTS of German-Irish stem cells. It's another one of the upsides of being part of the White majority. Yay!
But, maybe you're mixture is Ugandan and Irish. Like I said, screwed. Because, really, think about it. How many Ugandan-Irish people have you met? If you're answer is more than one, please, tell me: Are you part of some secret enclave of Irish-Ugandans? Where is this Oz-like land? And where are you storing your babies' stem cells?
The solution, going forward, is for every expecting parent to save their future child's stem cells. Your little Norwegian-Egyptian baby's stem cells could save a life in the future. And, if they don't get to save a life, they might be able to regrow your baby's own damaged cartilage. Knowing that you have those stem cells stored could ease some of your concern when little Italian-Filipino Jimmy goes all Peekaboo Street while skiing (she tore her knee THREE times). Maybe his stem cells will help him recover faster and better. Cool!
But seriously, my main point is that mixed kids are more likely to die from leukemia because they can't find a match (I'm not siting a source because I don't feel like searching for the data). If they are part Black, they are more likely to have sickle cell anemia, which afflicts people of African descent more than Whites, and yet they are less likely to be find matching stem cells that could cure them.
So, please, save your babies' stem cells. Now that I no longer work for a private stem cell bank, I can publicly root for you to donate them via the National Marrow Donor Program (www.bethematch.org), if you don't want to pay the private storage fee.
And no, this blog post was not sponsored by anyone. I just got home from the gym and was thinking about mixed people health issues.
But here's the thing, if you're mixed, like me, and you have a health issue that could be treated with stem cells, you're probably screwed. And by screwed, I mean, get your affairs in order because the odds of finding a match are slim. Unless, of course, you have full-blooded siblings who are your exact same mixture. Then, you're in the double-digit percentile of finding a match. Phew!
Without those potentially matching siblings, your odds go up and down, based on how common your mixture is. For example, if you're "mixed" German and Irish (I'm being nice; everyone's heritage is sacred, even if it's ordinary). In America, the banks have LOTS of German-Irish stem cells. It's another one of the upsides of being part of the White majority. Yay!
But, maybe you're mixture is Ugandan and Irish. Like I said, screwed. Because, really, think about it. How many Ugandan-Irish people have you met? If you're answer is more than one, please, tell me: Are you part of some secret enclave of Irish-Ugandans? Where is this Oz-like land? And where are you storing your babies' stem cells?
The solution, going forward, is for every expecting parent to save their future child's stem cells. Your little Norwegian-Egyptian baby's stem cells could save a life in the future. And, if they don't get to save a life, they might be able to regrow your baby's own damaged cartilage. Knowing that you have those stem cells stored could ease some of your concern when little Italian-Filipino Jimmy goes all Peekaboo Street while skiing (she tore her knee THREE times). Maybe his stem cells will help him recover faster and better. Cool!
But seriously, my main point is that mixed kids are more likely to die from leukemia because they can't find a match (I'm not siting a source because I don't feel like searching for the data). If they are part Black, they are more likely to have sickle cell anemia, which afflicts people of African descent more than Whites, and yet they are less likely to be find matching stem cells that could cure them.
So, please, save your babies' stem cells. Now that I no longer work for a private stem cell bank, I can publicly root for you to donate them via the National Marrow Donor Program (www.bethematch.org), if you don't want to pay the private storage fee.
And no, this blog post was not sponsored by anyone. I just got home from the gym and was thinking about mixed people health issues.
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