Patient Comments: Sickle Cell Disease (Sickle Cell Anemia) - Experience

Please describe your experience with sickle cell disease (sickle cell anemia).

Comment from: lovinlife, Published: January 27

I am a sickle cell sufferer and I have had it since I was born. I am 18 years old and I have regular blood transfusions, my sickle cell has been quite manageable however it has lead to other problems like my knee giving way quite often. Through my experience and listening and reading to other people's experiences I have realized that there is more to life and with looking after yourself and taking medication at the right time you can lead a healthy life just like other individuals who may not have any illness at all.

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Comment from: Faith in Me, 45-54 Female (Patient) Published: January 25

I am a 53 years old mothers of two. I have had sickle cell since Birth. My mother tells me I am part Europen Caucasian so I don't look like I have sickle cell. But when I am sick I know that I have it. I too did not want any children because I did not want them to suffer like I did. But God have given me two beautiful girls and they do not have it. I come from a family of 10 girls and I am the only one that has it and I and glad because I know that I am the strongest of the 10. I control my SC with OTC drug, Hot baths and lots of fluids. I had the same Doctor for 29 years and He makes sure I check my blood every years,I am thankful to God because after Hurricane Katrina He was the first person I look for when I came back to the city. I did not care about any of the other doctors because I knew he was the most important one because of the stress and all the loss I have to handle. I continue to battle with fatigue and other illness but all in all I am feeling good. Thank God for all of you who continue to live with this and continue to be strong. I work at a place that has not knowledge of my illness and these are black and white people yes I am amaze at this. But again I don;t displays that I need anything from them and I manage to keep my jobs. I feel that if I can take my daughter to school everyday I can go to work. My Motto on all my letters end with (God keep me on my feet)

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Comment from: samuel, 25-34 Male (Patient) Published: December 01

I have experienced this disease first hand because I am a patient; it is hell Ido not wish it for my enemy. I would like to help in anyway to reduce the effect if this disease on the little children.

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Comment from: lily, 35-44 Male (Caregiver) Published: November 02

When my husband told me before our engagement that he had sickle cell anemia I was so sad and broke down in tears. I still agreed to marry him nonetheless and face the consequences. He is 36 years and so very strong. He is very energetic with household chores. He drinks a lot of water as this helps his blood freely and prevents blockage of his vessels. I believe he will live till 100 despite his sickle cell anaemia.

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Comment from: MSMOSS1024, 45-54 Female (Patient) Published: October 07

I was diagnosed with sickle cell traits as a child. I am now 46 years old. I always knew even before the diagnosis that something was wrong. I used to have joint pain at a very young age. I would tell my family that I had arthritis, because I knew from listening to my grandparents that it did cause joint pain. Over the years, the pain has somehow managed to get worse; maybe age has had something to do with it or other medical issues. But the point I am making is don't let anyone tell you that just because you have the traits not to worry about anything, because you do have symptoms of some kind and may not realize what is causing it.

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Comment from: jbyrdswife, 3-6 Female (Caregiver) Published: August 17

I am a 38 year old mother of 4 boys and my youngest child is my only daughter. She is 4 years old, type ss sickler. We experienced our 1st bacterial infection in her blood both staff and strep at the same time this past June. It is very scary and very painful to watch her go through this. She is strong though. We have only been hospitalized 5 times her whole life and deal with the pain crises at home with warm baths and lots of hugs.

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Comment from: 45-54 Male (Patient) Published: August 17

Early in my life I had symptoms related to sickle cell (pneumonia). By the time that I was 15 I had pain in my wrists, I went to the hospital and they never found anything, a doctor said that I had Rheumatic Fever. I had bleeding of the later eyes at 18, and I had laser surgery to stop it. Many times after this I had severe pain, and the medication that I was given never seemed to help. By the time I was 45 I had my spleen removed and at that time it was realized that I had Sickle Cell.

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Sickle Cell Disease (Anemia) - Diagnosis Question: How was your sickle cell anemia diagnosed?
Sickle Cell Disease (Sickle Cell Anemia) - Symptoms Question: At what age did symptoms of sickle cell anemia first appear in someone you know? Please describe other symptoms.

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