IAmA 20 year old male with sickle cell disease. My life expectancy is 35.

Being in the hospital that many times, what makes the biggest difference in your perception of care that you receive? What makes the difference between a good hospital stay and a bad one?

The fact that I live in Canada makes my life much easier. I really think I owe my life to free and socialized health care, I can't imagine having to pay for my stays, I'd be either broke or dead.

A good hospital stay is whenever I'm not perceived as a drug seeker/junkie. A 20 year old black kid asking for heavy doses of narcotics always triggers an alarm. I've been refused care many times because of this, it sucks but there's not too much I can do about it.

Really now, You still get stigmatized as a junky even when they look at your history?

Yup, it really doesn't bother me anymore. I try not to get mad over things I can't control so I just let it slide.

Thanks for doing this AMA - this disease is highly stigmatized and not understood enough. I've worked with sickle cell patients all of my career although they are not the majority of my patient population.

I have seen very drug seeking patients who probably give the rest of you a bad name. What confuses me sometimes is the patients who ask for gravol/benedryl IV PUSH. Are these medications necessary? I understand narcotics but why the others? And wouldn't it not matter how it was administered? To me, wanting an IV PUSH is just seeking a buzz. They often know exactly what times those medications are due, too and will push their call bell 1 minute before the hour.

Do you have any light to shed on this and do you think that there are inevitable behavioural problems associated with having a chronic illness?

I try to hold judgement and whatever medications are ordered I will administer without any "are you sure you need that?" Or exasperated sighs but if you have any advice on better care of these people on a one on one nursing basis that would be great!

My hospital did a trial on having a specified SC nurse to personally follow patients and advocate for them. I think better resources are sorely needed!

Edit: for clarity - IV PUSH over 1 minute as opposed to IV BAG over 15 mins

Don't doubt anyone in a crisis when they ask for specific medications. It's very common for someone with SCD to ask for gravol/benadryl along with their pain medication. For example, it eases the itching and nausea.

And of course they know when their medication is due and they will ask for it because they NEED it. You'd understand if you knew the amount of pain they experience.

Just try not to judge.

I've been refused care many times because of this

Can you be more specific about how you were refused care? In the US, an ER cannot legally refuse care to a patient for any reason. If it does happen, there are enormous fines and penalties.

Not refuse in the literal sense, but they'd refuse to give me any medication to help with my pain.

How has this changed your perspective on the world? Are there things you consider now, i.e. The meaning of life, ethical dilemmas, political crisis', etc. more or less important? What would you tell a 19 year old college student is something he should value? Also, what are possibilities of major advancements in the treatment of your disease in the next 15 years?

Wow, I love this question.

This whole experience has really caused me to mature much faster than most people in my age group. Whenever I think about politics and international conflicts I really lose faith in humanity. There are so many things going on in the world right now that are absolutely futile and destructive towards our advancement as humans. We should be focusing on preserving this beautiful planet we live in instead of depleting it.

What advice would I give a 19 year old? Value your time. At 19 you have your whole life ahead of you and depending on the choices you make that will dictate how your future will turn out to be. Realize the outcome of your life is completely up to you and anything is really possible if you put your time into it.

Have you planned out how you want to live the rest of your life? As in, most people at 20 would look at what career they may want to do etc, but do you want to travel, work, spend time with family etc?

I can't even begin to imagine what it must be like with a potential age limit put on your life.

I know exactly what I want to do in life. I want to build something that will outlive me and serve other people way after I am gone. I'm a developer right now and make apps/websites for other people and get paid for it. It's amazing because I get paid very well to do something I absolutely love.

I don't have sickle cell but I know where you're coming from. I'm 39 in a couple weeks and probably only have a few years to live myself. I have some serious things wrong with me but its the little things that bother me the most.

I have peripheral neuropathy (basically nerve damage) from diabetes and a stroke I've had. It messes with my balance when a room is too dark or I close my eyes to wash my hair in the shower because my brain doesn't sense my feet like it used to so it needs visual cues.

I'm also epileptic because of the stroke and since the neuropathy causes twitching, I sometimes get little anxiety attacks thinking I might have a seizure.

Anyway, my question is, what are the little things that bother you aside from the big things? Especially those things that might be directly related to your disease.

Little things that bother me is the lack of awareness when it comes to SCD. Nobody really knows about it and there's not that many doctors out there that know how to treat it.

How does that feel? Knowing that you have a limited life expectancy. Do you think it's fair?

Fair? No.

But then again life isn't really fair at all, some people have it better than me and a lot of people have it worst. So I try not too think about it too much.

I might only have 15 years left, but that's enough time to build something that lasts forever.

Hey, just one or two quick questions! My grandmother runs a camp for children with cancer and blood related illnesses like sickle cell.

Do you have any experiences with a similar camp? If so, do you have any comments or suggestions that could improve the camp experience for these children?

Sorry, I've never attended any camps like the one your grandmother runs. I think it's very nice of her to do something like that. Tell her I said thanks.

how does the disease affect you on a daily basis? Are there certain foods /activities that make it better or worse?

Alcohol is a huge no for me, which is fine I've never really liked being under the influence anyways. Staying hydrated is a also very important and getting enough sleep too.

Can you smoke weed?

Smoke? No. But do I use cannabis? All the time, I have to actually.

It helps absolutely wonders and it's a great alternative to the harmful opiates doctors prescribe me. Cannabis has really helped me out in ways I can't describe, it's a wonderful medicine.

Thanks for the response. Which ways do you consume cannabis?

Vaporizing and eating it.

Do you think it would help being implemented into your care during a hospital stay - say, in pill form? And have you brought that up with any docs?

Not really, I already get judged enough when I ask for legal medications. Asking for Cannabis is a step I am not willing take.

We supply Nabilone to our cancer patients which is a derivative of cannabis and why I asked since its available (I'm also in Canada).

Also asking because I'm genuinely interested in SC patients receiving better care and if I can suggest things in my hospital that might help I'd like to do so.

I think some of my comments seem like I have a bad view of SC patients but I was speaking more in a general sense of what I've seen in my experience, not necessarily my personal judgements.

If it's proven to help with SCD I don't mind taking it at all. And thanks for clarifying.

Do you have a girlfriend? If not are you afraid of not finding love?

Love is the least of my worries, haha.

What do you experience during these crisis?

Which people in your life help you the most?

Peace.

Extreme excruciating pain that I will not even begin to describe, but trust me when I say it's not pleasant.

Friends and family help me out a lot, also business clients that help me pay the bills and the cost for my medications.

If you don't mind me asking, what are your religious beliefs and how do those reflect on your given situation or your shortened life expectancy?

Not religious at all. I do believe there is something greater than us, but I do not associate myself with any religions.

Do you ever want to get married or have kids? or is that not really an option for you?

Also I read on wikipedia that due to modern medicine people can live up to 70 years with this condition, do you have another form of it that makes your life expectancy 35?

I have the actual disease, most people only have the trait. However, I know its possible to live up to 50 - 60 even with SCD. My case is a bit different and severe than other people, a lot of family members died before they reached their 40th birthday, my mom being one of them.

I haven't really thought about getting married yet or having kids.

What is top of your bucket list?

Contribute to developing a cure for the disease.

My friend's son has a form of sickle cell and his was eventually cured through chemotherapy and a bone marrow transplant. Would something like that work for you? Is it something you're planning to do eventually?

Possibly, but from what I hear it's very risky and there's several complications that come with a transplant.

Could you ELI5 how this disease affects you? Biochemically? I'm curious because I've studied it in Biology classes but only along the lines of phenotype diversity.

Also, do you just have mad anxiety about what you can do? I'm not talking about long term plans, but rather like, "Can I go do something for four hours today without something bad happening?"

Okay, I am not a doctor and I am horrible at science but I will give it a shot.

I produce blood cells that are hydrophobic meaning they don't absorb water as they should. This causes some my RBC to collapse on themselves and adopt a sickle shape. These sickle cells then get clogged in my capillaries, arteries, and veins and interrupt the flow of blood to certain parts in my bodies. When that happens I don't get oxygen to parts of my bodies that should and my brain signals me with pain.

Are you taking hydroxyurea? If so, has it helped? If no, why not?

I am taking Hydroxyurea, and yes I believe it helps wonders. It works by increasing the production of fetal hemoglobin in your body which are blood cells that don't sickle.

A medical expert would probably be able to explain it a bit better.

I work in medical research, particularly in the field of non-malignat blood disorders (sickle cell, thalassemia etc) and am quite interested in this AMA. So I apologize in advance for the onslaught of questions below:

Have you participated in clinical trials associated with sickle cell? Would you be interested in doing so?

Do you have readily available access to primary physicians for medical care or do you primarily rely on ER/triage care when you have pain crises/ACS?

Edited to ask: Have you considered gene therapy/transplant?

Sure, I'd love to participate in tests/clinical trials. Anything that will advance the medical field and help find a cure I am willing to take part ini it.

Never considered any sort of transplant. I hear a bone marrow transplant is a feasible option to getting rid of SCD, never really considered or looked into it.

What has been the single, happiest moment of your life?

It's too early to say.

How'd you feel about your own education, and with that pursuit of a career?

I graduated high school but I decided not to pursue college. Instead I spent time learning valuable skills like programming, web development design, graphic design etc...

I make $2,500 - $3,000 every month working from home and everything I needed to learn was available on the internet for free. No crippling debts and no loans. I don't regret my decision not to attend university one bit.

Nice. What languages do you know?

English, Arabic, French, and a bit of Spanish.

If you meant programming languages: Java, Javascript, Php, MySQL, Ruby, Python, C#, C++...

I'm not sure if this question may be perceived as rude or not, but if there was a cure for Sickle Cell Disease, would you take the cure, and if do, what would you give to have it?

I'd definitely take the cure.

What is your favorite type of food?

'Merican food.

Why not take lots of drugs and try to become spiritual as heck with the time you have left?

I do experiment with drugs every now and then. I won't overdo it.

Forgive my ignorance but is the pain like say one of your extremities falling asleep, where it feels like thousands of piercing needles??

I can't really describe the pain too well. Just imagine someone putting a lot of pressure on a specific part of your body. Like a boulder on your back that keeps getting heavier and heavier by the minute.

Would a bone marrow transplant cure you?

It could, but there's a lot of things that could go wrong too.

I had a friend from high school a few years back who has sickle cell, I haven't talked to him in a while. Is the life expectancy generally the same for most people? Also I've never really heard him talk much about hospital visits, could he just have a milder case than you do?

It varies a lot. I have a cousin that has SCD but he barely has any crises at all. Then again, I also have another cousin that's been in the hospital for 3 months now because of his SCD.

what happens if you get a transfusion of regular blood?

Increases my hemoglobin but can also lead to an iron overload or something like that. Transfusions aren't that practical for people like me.

Off topic question relating to your name: Are you also a FOREX Trader?

Thanks for doing this AMA it's quite inspiring to see how your dealing with your challenges :)

Yep, I was into currency trading a while ago. Anything that allowed me to make money without a job was in my interest at the time.

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Don't be sorry, its not your fault. You never know, I might live to 70. Anything is possible.

One of the greatest people I have ever met was my school Science teacher. I haven't met anyone else who has such a great outlook on life, he had the biggest grin and got the best out of every single one of his pupils.

Only he had sickle cell disease (anaemia), a fact I found out by accident after overhearing two other teachers discussing why he hadn't been in for a week. He was 54 years old when I left school (8 years ago) and he is still teaching and going strong today.

Always keep your chin up bro and live life to the absolute fullest, have faith in yourself and in science and medicine as well because you never know what could happen.

Thanks so much, this is really encouraging.

As an existentialist this is one of my "dream" scenarios (for lack of a better word). In my head this kind of poignant reality really hammers in the absurdity and futility of life. I wonder if I would feel a stronger connection to life and this world if I was put into such a situation as yourself.

How do you cope with the absurdity and helplessness that you must feel? Does this leave you resentful at the universe or do you gain something unseen.

How do you cope with the irrational mind? Do you find yourself lost in non-rational thoughts and emotions or is their a sense of clarity that comes with it all?

Sorry for all the questions, I wish I could talk to you for days.

Best of luck, fellow traveler

Every day I wake up and realize how lucky I am to be alive and then I use every single minute of the day to make the biggest impact I can. That's how I live my life, I don't let anything go to waste.

I have no time for people who don't add value to my life, this might seem absurd and conceited, but the truth is I don't have a choice but to surround myself with people who will help me become the person I want to be. All I do is spend my time building and/or creating things, I don't want to live my life as a consumer...I'd rather be on the other side.

And you can talk to me for days! We have the internet lol.

What kind of things do you build/create?

Anything from short stories to Android apps and websites for my clients.

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I really haven't thought about it to be honest. I guess I'm going to miss being alive.