Want to learn more

Hello: does anyone know where I can learn some comprehensible information on sickle cell....especially sickle cell trait. I and my Mother (who recently passed away) have SCT. I also have an uncle who died with complications stemming from SCD. Doctors and others always tell us that there is no pain or complications with health from SCT. But I get joint pain and feel contractions (pins and needles) in my joints, hands, legs. It’s only gotten more intense as I’ve gotten older. I just want the truth. Thank you for any information you can give me.

[seamsbydeb]

Hi. I am in the same boat as you...trying to get doctors to understand that my pain is caused by the sickle cell trait. Over the years I've had numerous tests to try to get to the bottom of my pain and nothing is found. In 2009 I went to the Sickle Cell Clinic in Augusta, Ga. They tested and confirmed I had the trait but turned me away saying they don't treat those with the trait only. Since my pains have gotten worse over the last 10 years I decided to give them another try. In 10 years nothing has changed, even though people with the trait have died suddenly due to complications caused by the Trait. I called to make an appointment and the receptionist says we don't usually see those with only the trait because they don't have problems. I said well I'm one of those who has problems. I went to my appointment yesterday. I voiced my issues and told them about all the tests I've had over the years. They're obtaining my records from my primary care provider and they drew blood. Then they said you can go. I asked if I needed to make a follow up appointment and they said they would contact me. So I already know this is going to be an uphill battle but it's one I'm ready to fight. I'm sick and tired of being sick and tired and I'm not waiting another 10 years because my quality of life now is so all I do is work and rest. I'm 56 years young...too young to just lie here in pain because my body starts breaking down after 3 days of work. There is not much info out there....you can use Google to come across groups like this where others share your same concerns but other than that I have yet to find a doctor who takes my concerns seriously. I will let you know if I make any progress with the Sickle Cell Treatment facility in Augusta. I know my pains are nothing compared to someone with SCD but they affect my quality of life and I have to take action now so my voice will be heard to give SCT the attention it deserves. Every SCT case is different...but I like you have stiffness, joint pain and flulike aches that can last hours or days. Will do my best to keep this sight updated on how my next appointment goes.

[Hidden in reply to seamsbydeb]

Thank you so much seamsbydeb for sharing your story with me. I am sorry that you have to go through such pain. You will be in my prayers. Yes I look forward to your update. I know we are not the only ones. My Mother was one who suffered too. I personally believe that because this disease afflicts primarily people of color why it goes so overlooked....but I won't get into that now....Take care of yourself and be patient with yourself.

[anjana_indheal]

Hello, Sorry to know about your condition. Are you aware of the only curative procedure that can cure sickle cell anaemia - ie Bone Marrow Transplant (BMT)? This is a medical procedure wherein the damaged or diseased bone marrow cells are replaced by new and healthy bone marrow cells from a donor. The donor is identified by doing a test for HLA matching. Normally it is easy to find donors from immediate family. Siblings are potential donors. The most important thing to be aware while going for a BMT is that during the procedure in order to avoid rejection of the new cells one's immunity level is brought down to a minimum. Hence it is very very important to avoid any kind of infection during the recuperation stage. This is why you should opt for a hospital that has good experience in handling BMT cases and follows good infection control practices.

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[QueenZelda]

Hi Byfamily, I have SCD and all my children have the trait. I have 5 children and my 11 year old daughter has joint pain especially after a day of running around and exertion and being very active. From talking with other people who have the trait I learned that you can experience mild to severe pain crisis. Go to see an experienced hematologist and if they don't seem to know how to treat you ask them to consult a more experienced physician. It's hard for doctors to seek advice from other doctors and I've experienced this problem. Also, as you get older you're going to experience more aches and pains especially in the joints. Try hot baths with Epsom salt, also boil chopped up garlic gloves and cayenne pepper in water and sip hot like a tea. It helps with pain believe it or not. I hope you find relief and I hope my advice will help you.