Learning from sickle cell warriors who have lived it.

January 2017


Being Vegan with Sickle Cell Disease

Interviewing Mattie Robinson



If you're like a lot of us, you've thought of ways to incorporate more healthy eating, especially for sickle cell disease; but have you ever thought about completely changing your dietary habits, perhaps even becoming a vegan?


Mattie Robinson lives with sickle cell disease. Learn about her journey to becoming vegan, and how it has improved her health below.





Tell me a bit about yourself.

I am sickle cell patient. I’m in my 30s. I have a young son who’s 2, and I have SS, but I also have persistent fetal hemoglobin. So it’s not SF sickle cell it’s SS+F. I do get some benefits of the protective fetal hemoglobin. I typically have trouble with the disease like three-ish times a year where I have to go to the ER, but I’m very rarely admitted unless something else is going on like a lot of stress or a really bad infection.


I work for myself I used to be a scientific researcher, and I actually worked on developing potential treatment for sickle cell disease before I changed careers and became an advocate consultant full time.



We’d like to discover more about your choice for being vegan. What is a vegan?

A vegan is someone who chooses not to eat or drink, (or some people even have in their household products) that are animal based or include animal based components. No honey, no meat, no yogurt. Some people think of it as extreme, but I think of it as another approach to the many out there of how to nourish yourself.



Tell about your journey. Were you always vegan?

I grew up in a typical southern meat eating family. I have been vegan for about a year and a half now. I, off-and-on have been vegetarian in my adult life and I made the switch to go vegan after I had a big life change, and a couple of informative experiences around what the effects of commercial farming are on the quality of food that I was consuming.



For people who don’t know, what is the primary difference between being vegetarian and being vegan?

There are different types of vegetarians like there are some people who only eat fish and no other animal products. There is some who eat dairy and eggs. There are some people that do dairy only and no eggs. Vegan is no seafood, no honey, no eggs no dairy. It’s just plant-based; everything comes from a plant.


Cassandra: Nothing to do with an animal correct?


Mattie: Correct.



Have you found that your eating habits have helped manage your sickle cell disease?

Yes! I do feel like it makes me feel like I’m more rugged (laughs). I feel like I am able to handle more before I feel sick and I am able to bounce back quicker if I do get sick.


I’ve notice a difference in not just the number of days that I feel pain or fatigue, but my overall energy level. It’s a lot easier to keep up with my son now, than it was beforehand. The level of activity that I am maintaining each day is higher than it was before. I am happy and I don’t feel like I’m struggling and forcing myself each day, and I’m not a coffee drinker.



Are these the same effects as being vegetarian or are they different?

I didn’t realize until after my son was born that I’m dairy intolerant, and I’ve always been dairy intolerant, but I had no idea. I loved cheese just like lots of other people, and I drank milk because as a kid that’s what everyone says is good for you. But as a result I had fatigue and I had bloating, and everyone told me that was sickle cell.


When my son was born, whenever I consumed dairy, like if I had yogurt for breakfast or bread and cheese with my lunch, he would get a rash and he would get very bad colic. So, I did an elimination diet and we found out that dairy was one of the things that was triggering him through my breast milk.


I stopped consuming dairy and all of a sudden after three weeks of not having dairy, my whole life improved. My stomach was flatter, I had energy, I slept better and life was easier. It was like “oh my gosh” all this time. Thanks kiddo.



Are there any stipulations to being a vegan, have you had to take any precautions you need to take in regards to being a vegan? For example they say you may need to take a supplement if you’re not eating meat. Are there any stipulations that you know of?

I chose to still take a prenatal vitamin, even though my son is older and I’m not planning to have another child right now. But just because I noticed my hair, skin and fingernails were better, so I thought that my organs are probably doing better too. So, I still take the raw vegan whole food based vitamin and I make sure I keep up with getting my blood tested and everything. I’m very open with my doctor about my dietary choices. We haven’t seen any deficiencies cropping up since I started. I guess because I’m already taking a very comprehensive vitamin I’m able to avoid the potential risks.



Is [being vegan] something you do have to consult your doctor with especially having sickle cell disease?

I didn’t. I made the choice on my own and was just open with my doctors about it. I was also in relatively good health when I made the decision to. I think if you have some other things going on, depending on your doctor and what might be happening, they may want to weigh in on the decision to give you different perspectives on what you might expect.



Do you have any foods or recipes that you turn to when you’re dealing with sickle cell pain?

Yes, actually. When I have a crisis, or I suspect that I am at risk for having a crisis, I like to eat a kale and orange wedge salad. I don’t know why but it tastes so delicious to me and I know that oranges and orange juice helps you absorb iron better. There is a lot of iron in kale among other things. It was just something I started craving, and then it became my traditional meal that I eat when I’m not feeling well. I did some research on it later and was like “oh this makes sense!”


I really like pumpkin seeds as well. They have a lot of minerals that are hard to find in high quantities in other foods. They’re super simple and they keep for a long time.



What’s your favorite go-to vegan recipe?

Hmm. For Christmas last year, I made dumplings, but they were made from pretzels and this vegan meat made from pea protein (the brand is called Beyond Beef) and it looks like ground beef and the texture is very similar to ground beef. I think the flavor is really rich and hardy. My brother and my dad, who are basically meat-atarians (pretty much carnivores) really liked it. I thought that was delicious.


Another thing I really like is simple pasta with peas, steamed broccoli and a splash of lemon juice and some salt and pepper.


I follow a couple of blogs and also with social media I use it as a recipe book, so I’ll follow vegan women who have blogs or cookbooks out. One that I love, she’s really innovative, is Olives for Dinner. She does vegetable hacks, to make things like smoked salmon that’s really baked carrots. She’ll make the Chik-fil-A sandwich, but it’s really tofu inside, instead of chicken.


It makes my social media work for me. Areas in my life that I want to try and improve, I’ll look for people who have it more together than I do. I feel like seeing it and being reminded of it makes me feel like “I can do this, this doesn’t seem so bad.” Before you know it, you’re in the kitchen experimenting.



What advice would you give to someone who would like to start eating healthier specifically for sickle cell disease?

If you have vegan restaurants in your area, any time you have special family events, or if you’re going to go out, or if you're single and you’re going to go on a date night, treat it like an adventure and go to the vegan place. Ask around or talk to the people at the table next to you, or talk to your server and do your research that way.


One thing early on I think people struggle with is when they make big dietary decisions is worrying about working so hard to cook something that you’re not used to making and then not having it turn out right. If it’s possible you can outsource the work at the front end. If you don’t like it you can walk away and you haven’t really invested so much of your blood, sweat, and tears into the meal.


When I became vegan, I was living in a remote area. It was difficult to get to the grocery store because it was so remote. The best place to do my grocery shopping was the local farmer’s market. Every Saturday, women and men would come with their crafts and produce, and there was a lot of exotic produce, so naturally I started buying more produce because there was all this interesting stuff to try out and learn about.


I think also picking up a vegetable or fruit that you’ve never seen before and trying to learn about how to cook it and use it. You can turn it into more of an exploration. Instead of like “ugh, I have to do this for my health. I have so much riding on this” more like a fun exploration and just take it slow if you don’t want to dive in right away.



What advice would you give someone who would like to become vegan? What are the first steps?

Get used to reading labels. You’ll be surprised. When I realized I had dairy intolerance, and that my son has it, you’d be surprised at how many things have milk in them that you wouldn’t expect. Like bagged veggies from the frozen section, some of them have whey included, and whey is a component of milk.


I would suggest reading labels because the one thing you don’t want to have (that would be frustrating) is to start your journey to becoming vegan and have a setback like getting sick. In that case, you don’t know whether you ingested something that your body isn’t used to anymore; for example if I were to eat something with dairy in it, it would make me feel sick. I wouldn’t know if being vegan was not right for me, or “is it just because of this?” or “is something else happening?”


Getting good at reading labels and understanding what’s in your food is animal based and not animal based will set a good foundation even if you don’t want to get started. If you don’t want to dive in with two feet that’s a good place to start; if you want to take it slow.



As a person living with sickle cell, what general advice would you give to others with the disease?

Do it for yourself. In my household and among my friends I was weird for going vegan or not choosing to eat meat at family gatherings or events with my friends or out to dinner. I had to be resolved in it for myself and committed to trying it out because I was curious and not in order to please someone else. Not because I was desperate to try something, but more because it was a direction i was motivated to go in. Because of that I didn’t feel that I was lacking support (even though people were snickering at me at my plate full of broccoli).


One thing I would say to people is “I have to live in this body, you don’t live here. I’m not judging you for what you eat. Let me eat my carrot sticks and be happy. Or my vegan-ized veggie burger with sweet potato fries.”



Published January 28, 2017


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