Sickle Cell Trait & Thalassemia

Hello I am a 59 female diagnosis with sc trait and Thalassemia having many crisis over the years from age 25. Recently hospitalized in crisis after 6 yrs without any, followed by blood in urine and weight loss. Should I expect more of this why do I have this dual diagnosis and why so active crisis with just a trait? Thank you for this site.

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  • Hi Somersinger, welcome to the forum. I am sorry to read about what you are going through but I am extremely confused about you having the trait with thalasemia. I have never heard of that. Are you sure you don't have a form of sickle cell with thalasemia? Some people with sickle cell don't have as many crisis or do not have a specific pattern when it comes to having crisis. With the blood in the urine, it can sometimes be your red blood cells breaking down. It's called haemolysing or haemolysis. Not sure if I got the spelling right. You should go to your doctor to be sure about what is going on. I still believe you need to be very sure if it's just the trait you have or full blown sickle cell. Or you can enlighten us more about having the trait with thalasemia. As with expecting more is "these" if you have sickle cell, it can be extremely unpredictable. Good luck. We are all in this fight together.

  • Thanks, I hear what your saying about trait with Thalassemia it's my burning question however my best explanation still comes from doctors who are learning as they go. Living in a rural area with few cases leaves me at a disadvantage also ... Guess they do their best. But this is the diagnosis I received, whether its entirely accurate has always been my concern.

  • Hi Somersinger, welcome. For many years I thought I had only the trait, but a few years ago after going into one of the most painful crisis I was diagnosed with sickle beta plus thalassemia which explained the pain. My doctor said that it is sickle cell in a moderate form with thalassemia attached. I got one from each parent. Lucky me huh. My best advice would be to be retested then you will know exactly what you are dealing with. Hope you have pain free days.

  • Hello, I also have sickle cell trait with alpha thalassemia. Doctors tell me I shouldn't experience pain but I started to experience pains so excruciating from about 25 years old. I have been to the ER each month for two years straight. I feel hopeless. none of the over the counter meds work and the doctors look at me like a drug addict. What I don't understand is that if we have some amount of sickle cells in our body why cant doctors see that we can at times have crises. Please any input any help. Living in NYC so many resources but none for me

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