I heard that hydroxyurea causes infertility. This was from a hihgly respected Professor I know. I think this shoud be researched more into. Also, morphine, though it kills the pain, somehow has killed the patient as well in the past. I heard this at a recent symposium I attended.

I heard that hydroxyurea causes infertility. This was from a hihgly respected Professor I know. I think this shoud be researched more into. Also, morphine, though it kills the pain, somehow has killed the patient as well in the past. I heard this at a recent symposium I attended.

I am a sickle cell patient, and I can tell you the terrible side effects hydroxyurea causes. The morphine drugs are no better, it causes gall stones. I have suffered terribly throughout my life and it's not getting any better. My hemotologist prescribed pain medication and send me on my way. Again, I can attest that the treatment has not changed for the better in the last 15 years. I am hospitalized every 5 weeks, and the same routine treatment (i.e, iv fluids, blood transfusion, pain meds and antibiotics) is provided. The same routine treatments for the past 20 years, but yet I'm still rehospitalized frequently. The hospital stays last from 7 to 17 days, each visit. My poor health is nothing to be joyous about. The doctors here in Arizona know little about sickle cell disease. And yes, I have been denied access to medical care because an emergency doctor thought I was a drug addict. In fact, I was seriously ill, and was denied medical attention due to the physician's ignorance. Within two hours of being denied emergency medical attention, my mother took me to another hospital where I ended up in the intensive care unit. I can tell you many true horror stories about the lack of care for those with sickle cell disease in Phoenix, Arizona.

I grew up in another countary and never knew that I had sickle cell disease until I had my first child. I went into crisis at 8 months pregnant and almost died. The doctors say I am 87% full sickler, and mine manifests itself in different ways. In my senior days at high school, I was always tired and slept a lot in class, and did not do well in my final grades. I loved athletics, but never could manage. It has now affected my sight as 10 years ago I had a broken vessel in my left eye and the doctor saaaaaaays it is a result of the sickle disease. I had a few crises since my discovery, but thank god nothing too major. I am interested in doing a further study on this type of manifestation

I had a sister who suffered all her life with sickle cell disease. She died at age 26 over 40 years ago as there was no treatment other than transfusions. I now have a great grandson with the disease and we are beside ourselves at what his future holds. He is 5 years old and suffered his first pain event about a month ago. He was brought to the emergency room, but not admitted to the hospital for treatment. I cannot for the life of me understand why there isn't more knowledge for treatment and management of this horrendous disease. The thought of this child screaming his way through life is so sad. It's almost as if it isn't as important as heart disease, diabetes, etc. It makes me so angry.

I know every drug doesn't work the same for all patients but I'm a sickle cell patient that hasbeen taken hydroxyurea for a year or so now. At first it give me mouth sores but eventually it started working for me. My CBC numbers starting going up from low 7's to 8.5's and higher. I've been real lucky. Last week I turned 40 years old and my doctors said I would never make it pass 2. Even after taking the hydroxurea the pain episodes still happen but not as frequently, so far.

Unfortunately, too little attention and research is done in this area and so many families are desperately in need of comprehensive care. I would recommend that families who have a child or loved one with SCD or a related hemoglobinopathies seek out one of the Centers of Excellence. Many times these centers see and treat adults as well as pediatric patients because primary care for the adult population is so scant.

The following are some of the best in the country:

http://www.sicklecell-info.org/CenterInfo.html

Fred Hutchinson Cancer Research Center Seattle, WA

St. Jude’s Children’s Research Hospital Memphis, TN

Children's Memorial Hospital Chicago, IL

Rush University Medical Center Chicago, IL

Children’s Hospital Oakland Research Institute Oakland, CA

Children’s Medical Center of Dallas Dallas, TX

St. Louis Children's Hospital Washington St. Louis, MO

Boston University Medical Center Boston, MA

Emory University/Grady Hospital Atlanta, GA

These centers offer therapeutic treatment plans and access to family resources that the neighborhood pediatrician or family doctor doesn’t. It’s important that patients receive regular assessments to assure that complications including liver damage and pulmonary hypertension are caught and treated early.

I have a 12 year old son who was born with Sickle Cell. He had his first pain crisis at 6 months. He started taking hydroxyurea at 3 years old. The medication helped greatly with the pain episodes but not the acute chest crisis. His lungs were beginning to show signs of scarring at 10. In July 09, my son had a successful bone marrow transplant from an unrelated donor at Children's National in DC. He is healthy happy and BUSYnow. I am so grateful!! Sickle Cell is a horrible disease, I know first hand. Please consider becoming a member of the bone marrow registry. Not enough minorities are a part of the registry. You are all in my prayers.

I am 44 years old and it was discovered when I was 16 that I had sickle cell trait S. I was always tired and would have these very painful episodes in my legs and sometimes my abdomen. My mother took me to several local (country) doctors who called it growing pains. I went in for an emergency tonsillectomy and the lab went crazy with drawing blood. The surgeon later came in to explain that anesthia had to be done differently because I had sickle cell trait. I was later referred to a Korean Hematologist who explained my case and the best way to care for myself. I had to give of sports but I did not give up marching band so I paid the price. My crisis got better over the years but I do what is right and visist my doctor regularly. My husband has sickle cell SC and has had a fairly decent life. Two years ago we went home to DC for the July 4th holiday and he went into a crisis. I took him to the hospital (sickle cell center...supposedly) and they treating like an addict looking for a weekend fix. He got worse through the night and we came back to Richmond where he was admitted immediately. He was at deaths door. He had an acute chest and what was later discovered was also a mini stroke behind both eyes. Today he has the best hematologist ever. One of our triplet sons was born with the disease and has had a miserable life. Hydorxey Urea worked for him for about 3 years. At the end of 2008 he became critical and the acute chest were happening more often. Everyday he lived in pain. He was not able to return to school so in July 2009 he had a bone marrow transplant and is now going through the recovery process. He is beginning to enjoy life and be a normal teen. Or baby girl was also born with the disease but thanks be to God she has not started with the same issues that our son had. There is still a great lack of knowledge in the African American community about sickle cell disease and that's why many are not going to a doctor(hematologist). But in going to the doctor we must still continually keep ourselves updated and get as much information as we can. Ask questions and be aggressive about your health care. Do not allow yourself to be intimidated by the health care team, speak up for yourself and make demands that are going to be benefical to you. Encourage your family and friends, church and community to get involved with the awareness and funding of research. Beg them to become bone marrow donors and blood donors too. Let's continue to pray and be proactive!

I have Sickle Cell Thalassemia and it's very painful. I'm 34 yrs old and I have been living with this condition since I was 3 months. I would like to get connected with people that have the same condition. I've had alot of pain in my lifetime. I usually get alot of pain in my legs and back. My heart goes out to some many people that have this condition. God Bless everyone and take care.