Advice on S.C.D and S.C.T

[cazzera]

Hello my name is Cazzera, and I have not replied for a while, as I am doing so much much research to educate for Sickle Cell Disease which I suffer form myself. I would just like to advice the post about having sickle cell trait and suffered fro years. Although I am not medically trained I would advice you to get tested again for not only sickle cell trait but for another form of sickle cell disease. For example thalessemia as I am 90% sure that sickle cell trait does not give pain. Some doctors have been wrongly giving advice that S.C.T gives pain. More than likely your other parent is a carry of some other abnormal gene that is part of S.C.D. Please if anyone is a carrier of one gene and having pain, get tested again as you should not have pain with S.C.T. My son is also a S.C.T and has led a normal life with no problems, ever.

[Tone124]

People like myself post these comments & experiences up to put it out there & share. Maybe someone has had even a similar experience. That 90% you're so sure of not being a licensed MD. of any kind & maybe just maybe I may fit into that 10 percent of uncertainty. I no what i have & have had all my days of my existence. For those of you that would like to share your experience with the disease please im all ears.

[amysassy]

Id say those doctors that you say have given the wrong advice are the rare ones that actually listened to those of us with problems related to sickle cell trait without blindly saying it doesn't cause a problem. Iam sure there are many people with no symptoms but not all

[cazzera in reply to amysassy]

Thats fine, just sharing. I just believe more research should be done!

[SCSZoe Partner Sickle Cell Society]

Hi Cazzera, at present, due to the state of scientific research, just as we can't say with any confidence that sickle cell trait DOES cause pain, we cannot say it DOES NOT cause pain. A lot of research is needed, but certainly some people seem to have no problems whatsoever with trait (while others seem to).

For the record, thalassaemia is not a form of sickle cell. If you mean carrying one sickle cell gene and one thalassaemia gene, this produces a form of sickle cell disease which you'd definitely know about! While some people do have sickle cell disease and don't know it until they're older, this is highly unusual. That said, it's always worth getting genetic tests done for haemoglobin C, D and E, as well as the thalassaemias, whether you think you're a carrier or not.

[Luvnuallways]

Your son is a fortunate case study of one. You say you are doing research if that’s the case you should knownthat is not a valid sample size. On the contrary many people do have symptoms from AS or ‘just the trait’. I just spent two weeks admitted with crisis that led to septic shock. The literature shows people with trait are at high risk of symptoms which are provoked by the same mechanisms that provoke it in SS such as dehydration, illness, altitude, trauma, pregnancy, and more. There is even a specific type of cancer that largely only affects people with sickle cell trait called renal medullary carcinoma.

You have a son. This cancer is more prevalent in males between age 8 to about 30s ( if memory serves regarding specifics of the ages). It is very deadly and kills within months of detection. Often the only sign is painless hematuria. So anyone with trait needs to have their urinalysis followed and under renal imaging of blood is detected.

There are hundreds of published peer reviewed articles delineating the possible sequelae of AS such as increases heart disease, stroke, and kidney disease . Loss of the spleen and renal hemorrhage are other sequelae of crisis in patients with AS only.

We have to be aware of the truth of this disease and stop turning a blind eye because of racism or politics or finances or plain old fear.

Having AS means half of your genes for producing your blood cells are defective, which means they will produce defective blood cells. In AS you will likely have 38-42% sickle type hemoglobin. Those cells then have lower affinity for carrying oxygen, they are stiffer and stickier than normal hemoglobin. This presents initially with unexplained aches and pains that often get attributed to ‘arthritis ‘ or ‘fibromyalgia ‘. It may show up as decreased exercise tolerance ie a child that just doesn’t ‘feel like going outside to play ‘ or cuts play time short. It may present as frequent unexplained kidney infections. Or abdominal pain that is horrific but lacks explanation. These patients get diagnosed as magically having these syndromes for no reason or as faking or as drug seekers.

The sad thing is that with proper treatment people can live a fairly normal life with good function. But without treatment the suffering is senseless and unbearable

Keep an eye on your son. Keep him hydrated. Give him folic acid and green herb ( green vibrance is a good brand) Noni juice and a multivitamin

Labeling AS as being benign and asymptomatic was politic to protect us from racism in the 50s to the 80s. But we do not have to be as worried about that now. It is past time to deal more honestly because lying kills.

Go look up all the poor young athletes that died because of untreated AS sickle crisis that could have been prevented with fluids oxygen and pain meds.

We need to educate our selves and fight for our right to the truth and to proper care.