I have full blown sickle cell and i lose hope a lot

[lostbaybgirl]

I need to know how to deal with this on my own im still in high school and i miss so many days and sometimes months the school keeps taking my family and i to court and charging us like its a crime for me to have sickle cell i really dont want to live in this type of world knowing im making my mom feel bad/sad

[Kobby]

The good thing about these forums is that you know that the people on here have the same challenges (yes, challenges not problems) as you.

Trust me when I tell you that I know how it is to be the sickly one, always out of school because your body is being ravaged by a condition you seem to have no control over. As a young boy growing up with a single parent in Africa, we had to find a way to face this challenge and I am happy to say that we did!

Apart from the medical help, you need to find another thing to hold on to (for me it was a believe in GOD; for you it can be a dream for the future). I find that a strong and positive belief in an idea, a dream, a system goes a long to help people in general, not just people with sickle cell, to develop. Suddenly, you have another thing in life to set you mind to other than your condition. It doesn't take the pain away; it helps you in another way - it gives you hope (and no, hope is not just for religious people as you need to be hopeful to be able to face life everyday no matter who you are). Hope can be your small ray of light when all else looks bleak. With hope and a dream there's so much to look forward to!

I am 29 years now, completed a masters' degree in Computing in a fine school in London, UK, about to get married to a wonderful woman and a budding entrepreneur. See, challenges not problems!

[2010wum2010 in reply to Kobby]

This is a lovely testimony

[Bluebells]

Stop! I don't know where you live but in the United States it is against the law for you to be penalized because you have a disability. Your illness is a legitamit cause for you to stay home if you don't feel well. As for your emotions about yourself,stop the pity party. God does not let us bare obstacles alone! Ever heard of Home School? My daughter has sickle cell and she felt the same way you do. I made sure she received her school work when she was home or hospitalized.She was ashamed of her illness. I know it is difficult,but you are loved by God and your family.Keep your head up! Take care of your health.Eat the right foods! Drink plenty of liquids.Live your life. Don't let sickle cell stop your dreams.! My daughter graduated from Nursing school and haS a beautiful ten year old. My daughter is 32. She went through the same feelings!!! Be inspired. You are Loved!!!!

[Anzy]

I am so glad to read all the positive comments you have received, it just goes to show that you are not alone. Having sickle cell myself I can say without bias that I know exactly what you are going through and sometimes it is hard to see an end to the torment but you can endure. Sickle cell is just something you have it is not who you are. It seems hard and difficult now but everyday you are little stronger. Stay strong because if you have sickle cell you have already proven you can endure anything.

[alebright]

Is homeschool something you may want to look into

[mrj2014]

I don't know where you live but you and your parents shouldn't be taken to court because of your illness..you need to get your medical records and complain to the school board..if that doesn't work..then work your way up from the school board..you can't be denied an education because you're sick..and homeschooling is also an option..keep your head up..God is in your corner..things that are hard to deal with makes us stronger..this is not the time to become weak..and I'm talking from experience..I'm 40 and missed a lot of school too..I remember the headaches my parents had when they had to explain my illness to the school.. But here I am still standing and still having to explain my illness..but it has made me stronger..explore your options.. You DO have options!!God bless you sweetie..

[MsKute]

Hey BabyGirl,

I'm 21 and I have hbSS. I faced very similar challenges to you to the point of being excluded from classes when I was in school. I know how isolating it is. The best thing for me was changing schools but before you do this, have your parents talk to the board of governors or the chancellor at your school to plea your case and explain your condition, (if they haven't already). I also don't think any court would rightfully try the case knowing that it is a medical condition keeping you out of school.

There are also ways and means of catching up with past work, for instance, I had schools post missed work home and would do the work with my parents or a tutor. I can only pay your situation gets better. Have faith that it will get better because worrying and stressing only make the sickling worse. Also have a doctor, social worker or representative from your Haematology dept write to your school/head of year/personal tutor explicitly explaining Sickle Cell and that the effect its having on your education cannot be helped.

I hope that you have some good, understanding friends too. I'm glad to tell you that I'm finally in my first year of university. LostBaybGirl, it does get better. Inbox me, if you live in England (I could give you some more advice if needed).

[Bluzinda]

You need to go on Hydroxycarbamide - it's brilliant & a life changer, it will definitely improve your quality of life! Good luck

[dotman in reply to Bluzinda]

Hi. What are your experiences with Hydroxycarbamide. Do you get any side effects from it? Do you ever feel like you have memory problems / loss due to it being a chemotherapy drug? What dosage are you on? Thank you.

[Bluzinda]

Take Hydroxycarbamide! It has changed my life, I can go to school, gigs, the Cinema (which used to send me straight to hospital). Be careful with yourself & do not give into peer pressure!

[BristolOne]

Hi, I am 51 and I am HbSS. I used to miss school a lot, sometimes months at a time. But I still ended up with two degrees.

You need to get your Hematologist to write you a letter for school, explaining your situation. Stress also causes frequent SS crisis, so your hematologist needs to explain that the extra stress school is putting you under is making your condition worse.

Above all be positive, Sickle Cell can be managed. Your positive attitude will help your family support you better, and will make your school come round in the end

[2010wum2010]

Wow! BristolOne well done