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Living Well with Sickle Cell, Without a Cure

Living Well with Sickle Cell, Without a Cure

This article was written by a guest writer, Ty Cohen, a sickle cell warrior off the Facebook page. His comments were so insightful and helpful that we requested permission to share with everyone else. 

Someone just asked me the other day, why do I believe that there is not yet a cure for SC? My answer was, “We can either just wait for a cure or we can do things on our own to better our health until there is a cure…” I honestly believe that it’s up to us to do all that we can to educate others on the seriousness of SC as well as build awareness around it. The other thing is for those born with sickle cell to be;

  1. As educated as possible on the disease itself, you always want to know just as more if not more than your doctors and with the Internet these days it’s very possible to read, read, read all you can about your condition. As a teenager I made a vow to educate myself on it as much as possible, so much so that often times my doctors would be surprised at how much I knew about what was good/bad for me.
  2.  Speaking of doctors, we need to be in constant contact with our doctors and health care providers: One of the best things that I’ve ever done was to build a relationship with my doctor (she’s a hematologist) and to have the ability to call her or the lab to schedule regular blood test so I know where my white blood cell and hematocrit levels are at on a regular basis… This is all about avoidance… If you know where your levels are at you can take it easy, hydrate yourself more and be prepared, versus waiting until a crisis comes into play. I think the worst thing you can do is wait until you get sick to see your doctor… You should make it a point to see him or her before that happens and nowadays everyone can have the proper health care to do so (Be it Medicare or a program under Obama care now that you can’t be turned down for having an existing condition
  3. Some of the other things that you can do to decrease the frequency of crisis are;
    • Getting enough rest: There are times when I hate sleeping because I feel that I am missing out on something or could be working on a project, but I also know that proper sleep is crucial to me having good health and avoiding crisis… Listen to your body, it will tell you when it is tired… Give it the rest it needs
    • Avoiding stressful situations. Sometimes this can be easier said than done, but there are plenty of things that we can avoid… Make it a point to not sweat the small stuff and usually it’s almost all small stuff
    • Eating as healthy as you can. This is a big one and that’s to eat the right foods and avoid the wrong ones. (i.e. eat more veggies, fruits and water based foods such as Watermelon, strawberries, cucumber, lettuce, zucchini, radish, celery, tomatoes, green cabbage, cauliflower, eggplant, red cabbage, peppers, spinach and broccoli )
    • Hydration, hydration, hydration. This is an even BIGGER one and something that we can all do know matter what our income level is and that is to stay properly hydrated. Before I go here I want to talk about what we should AVOID and those are things like sodas, fruit juices, etc… Now back to staying properly hydrated… The best way to do this is by drinking 4-6 liters of water a day which is about twelve 16-ounce bottles of water. For most people with sickle cell if your urine is dark yellow you are dehydrated and this drastically increases your chances of having a crisis or getting sick. Start paying attention to this. Ideally if should be very light yellow to clear. Please avoid the sodas they do nothing good for us, just fill our bodies with chemicals and junk and makes our organs work harder to get rid of the impurities.
    • Avoid caffeine. The next thing you want to do is avoid anything with high volumes of caffeine in them such as coffees, lattes, teas, etc… As much as I used to love coffee and tea, for years now I have made it a point to totally avoid everything with caffeine in it, if I can help it).. Why? Simply because caffeine causes your blood vessels to constrict and we need our blood flow to be as unrestricted as possible. It also makes you dehydrated. Ask your doctor about this and they’ll tell you, especially if they are knowledgeable about sickle cell.
There was a point where I would have a sickle anemia crisis and/or be in the hospital at least twice a month. Once I started making these changes and the others that I’ll discuss in a moment I’ve been able to reduce that to getting sick less than once a year now… and it’s been about 15 years. All these little changes work!
  • Some of the other things that I think we all should do is get in regular exercise… Nothing crazy, but light cardio at least 3-4 times a week and other exercise if you are up to it. (I weight lift at least 3 times a week as well). I can talk more about exercise because this is something that is near and dear to my heart, but I’ll wrap it up with saying this.
  • Last but not least the #1 thing that has helped me to improve my health the most (in my opinion) is continuously working towards improving my mindset and seeing and expecting the best for myself and my health. Instead of seeing myself as someone who is sick, I see myself as someone who can do almost anything I want, including living a full life..

I’m now in my 40’s. I have a beautiful, smart wife, 4 amazing children, own several businesses and travel around the world… And I started flat broke in the hood, in a housing project called Father Panik Village around the rats and roaches, bullets, crime, murder and everything else and on top of all of that. As bad as my upbringing may sound, I often think that if I didn’t have sickle cell I may still be where I grew up and maybe even worse.

So I say all of this to say that I know plenty of people with SCD who are well into their 60s, 70s and even a few in their 80s. So it does not have to be a death sentence. One of the best things you can do is change a few things that you may or may not do right now, become the ultimate optimist and EXPECT the best. I mean really expect it.

I’ve made it a habit to expect the best 99 out of 100 days and I’ve noticed that in most cases I get what I expect. By the same token when I start to worry about getting sick I often get that as well. So expect the best, you’ll be amazed at how often our mind will deliver to us exactly what we ask of it. If there is anyone out there who may have SD or who may have a child, sibling, significant, etc. who has it and needs someone to talk to please reach out to me…

Ty Cohen.

P.S. How ironic just as I was about to close this post out I just received a call from the lab where my doctor’s office is… They were calling me to update me on the blood test that I just took earlier today and to inform me that all of my levels look excellent… Please make it a point to see your physician on a regular basis (especially BEFORE) you get sick… Don’t wait until you have a crisis to see you doctor, I can’t stress how important this alone is and how it can help you to stay healthy just by being preventative

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Guest Writer

Guest Writer

This article was submitted by a member of the Sickle Cell Warriors facebook community page. The author's name is in the article. We do have the permission of the author to share this article with the general public. Thank you for submitting and sharing your thoughts, opinions, and experience with the world. To submit a sickle cell related post, send a properly edited article to Editor@sicklecellwarriors.com

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5 Comments

  1. Chantel
    Chantel September 11, 19:39

    Really enjoyed reading your article! I just started dating my boyfriend and he has SCD. I’m very anxious and curios on knowing ways to help him cope with this disease! Please e-mail me. Thanks Alot

  2. eve
    eve November 02, 23:58

    this is a story that all young warriors and parents should read. Those of us who have read it should print it out for others.
    You are a testimony. An ecouragement.

  3. Edith
    Edith July 27, 18:24

    Have liked e article and I would like to know more about e dos & don’ts such a patient can do to cope up with e condition while married. Please email me for more information on SD. Thanks

  4. gunju
    gunju February 11, 02:16

    It is very motivational artical that helps me to be a strong guy..i have sickelcell thallasemia disease but with proper guidence and treatment I dont had crisis since 5 years..and now I do exercise in gym..and do all that a normal person do..thanks

  5. Sickle Cell Warrior
    Sickle Cell Warrior April 17, 21:27

    @gunju, you should join our facebook page. We need more strong men like you! http://www.facebook.com/sicklecellwarriors

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