We still Hope
AllStripes is transforming how families are involved in development of new treatments. They make it easy for patients and caregivers to contribute their de-identified medical records to advance research from home, at no cost. They just added sickle cell disease to their platform and are excited to have the community join the movement! You can accelerate drug development in Sickle cell disease, your experience with…Continue
Checkout sickle cell 101 latest podcast episode with me :)
Added by Ade Dotun on August 26, 2019 at 9:38pm — No Comments
New site I found where you can look for trials in your country:…Continue
Hope you are all well and enjoyed your weekend. I just wanted to pass along some wonderful information shared by a fellow warrior. The National Heart, Lung, and Blood Institute is having a "Novel, Innovative Tools to Increase Public Awareness and Knowledge of Sickle Cell Disease Undergraduate Challenge” and would like to encourage those who are eligible to please …Continue
Added by Ade Dotun on November 4, 2015 at 10:17am — No Comments
It's been ages since i was here(last post was in 2011)...I stopped using my yahoo id for a while and i guess life happened...but I'm happy to be back...A lot has happened since my last post,lol...Got married, pregnant then had the most beautiful baby girl ever...
On pregnancy, I prayed against morning sickness, because that would cause dehydration and dehydration will lead to a crisis (we know the drill,lol)...and guess what? for 37 weeks, i had no…Continue
I am 30 years old now and it seems like I'm in the hospital every other month. In my teens and twenties I was great, virtually now problems and no hospital visits! Now, I'm a mother of 2 and sickle cell is getting in the way of my family time :( Anyone else notice that with age, health gets worse?
So sorry beeing away for so long. In fact it has been quite a while since I came here. Shamefull....
Yes, the reality of dealing with sickle cell just came to me as hard as it could. My son, who was crisis free until the age of 4, had a acute stroke 3 weeks after his 4th birthday. It was devastating and to make things even more painful, 6 months later he had the second one. We are worrking to have him a bone marrow transplant as quickly as we possivble can now,…Continue
Magnetig Therapy (the application of static magnets to the source of pain) is supposed to increase blood circulation thus reducing pain...Do they work?
Hello everyone..I am a parent of a 17 year old son with SCD type SS. He has had a fairly healthy life thus far. He has had his gall bladder removed, pnuemonia twice and two pain crisis in his life. First, I want to thank god for his health thus far and moving foward. I had a question for the younger men and women who suffer from this disease. My son has applied to several different colleges to include a college in GA. I currently live in NC and his father is currently in the military in…Continue
Added by chioma peters on October 14, 2011 at 9:29am — No Comments
Are you interested in lending your face to a photo exhibit of people living with sickle cell? Check out my blog http://sicklecell-ourvoice.blogspot.com/ and see how you can be included
Martin Luther King said, "We begin to die the moment we become silent about things that matter." THIS MATTERS
Added by P.Allen Jones on October 7, 2011 at 2:53pm — No Comments
I got an email from Urevbu Foundation about a clinical trial being held by the University of Memphis. It is a nutrition study related to hypertention and leg ulcers. If you live in the Memphis, TN area you may be interested.
See info below:
SICKLE CELL NUTRITION STUDY
Low nitric oxide in people…Continue
Added by P.Allen Jones on September 19, 2011 at 3:05pm — No Comments
I hope all is well with you.
I write a blog and am asking some people who graduated from college and people who are currently in college advice on college life. So I figured I would ask you guys since you're like another type of family/ community.
Ive been hospital free for 2 years ^_^ but I had a mini crisis this week. I almost forgot how bad it was to be in pain. Its soo annoying just having to put your life on hold. And it got me down a…Continue
Hello SC Family,
Is there anyone out there who has trouble sleeping at night? It does not matter what I take my body seems to get use to the medicine and I am up. Any help or advice will be appreciated.
i was curious to see if anyone was able to receive anything government wise in regards to our condition.
i was actually approved for SSI which took 4 years, but...... (eye roll here), once at the office to get things in order i was told that i am not disabled, that i am able to actually work, therefore my case was closed.
its frustrating because they do not take into fact that sometimes i am out of work for days, even weeks. so where is my income at that…Continue