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Sickle Cell Disease

Question:

What was the treatment for your sickle cell disease (sickle cell anemia)? Submit Your Comment

Comment from: wildcardmama, 55-64 Female (Patient) Published: December 03

I am 57 years old and I am blessed and I know this. I was diagnosed when I was five or six years old. Back then, the disease was new to the doctors. We moved to Louisville and at first they said I had the trait. After I start having children, doctors said I had the disease. In 1995, I was diagnosed with Beta Thalassemia Minor. I was told that is the reason I don't have as many crises as some others. Today, I am in so much pain and I know it is a crisis. I have called my doctor, but he has not called back. Most ERs in this city think you are wanting drugs like an addict if you are an adult and complaining of severe pain. Now if you are a child, they are Johnny-on-the-spot with the pain medication. This pain makes me angry because I need pain medication and the doctors can treat you badly until they get the results from your test back. Still I know I am lucky to be alive. I just hate the pain.

Comment from: Druscilla, 45-54 Female (Patient) Published: August 21

I am a 45 year old woman and I have sickle cell. It is so hard to put in words how sickle cell affects my life. The pain sometimes can be unbearable and doctors just don't understand. I feel that people don't take sickle cell as seriously as any other disease. Don't get me wrong I have the best doctor in Indianapolis, but I feel as though doctors and nurses don't know level of our pain. I have lived as a normal life as anyone with sickle cell disease can. And I hope to live much longer.

Comment from: Princess Warrior., 45-54 Female (Patient) Published: August 18

I am a 49 year old woman with sickle cell disease and the treatment for my disease is transfusion therapy which means I have to have a transfusion every month in order to stay healthy and out of the hospitals.

Comment from: Simon, 7-12 Male (Caregiver) Published: July 06

I feel very lucky and blessed to have read the testimonies from those who have grown up with sickle cell anemia. I have always heard that people with SC do not live longer than 6years. My son, 8 years was diagnosed with SC two days ago and this threw me out of shape until now. After reading these comments I have become very hopeful.

Comment from: egonzal, (Patient) Published: July 06

Hi I'm a male patient of sickle cell anemia type (ss) which by my research and my hematologist the worst of the two kinds of sickle cell. Well let me tell you in about couple of days I will be 40 years old Hispanic man from Puerto Rico. I know what some people out there are thinking how come he can have sickle cell anemia and be from a Hispanic background. Well that's the beauty of the science of gene on human body. Well my life hasn't being all that great. A massive left side stroke that kill all my left side for about 7 months. That happens when I was only 17 years old. At the age of 19 a heart attack which put me like I was a little baby not knowing anything about myself. Many crisis's over all these years. Which lead to go question my mother many times of why she brought me to this world with this painful condition Of course I was young and ignorant there where so many crisis over my younger years that at times I remember I was in so much h pain but didn't want to bother my mother again after a couple of weeks being out of hospital of previous crisis that I used to put a blanket on my mouth just to not make any noise or for her not to hear me that I was crying of the tremendous pain. As I write this comment I'm currently in a two weeks of being admitted at hospital because of a crisis. Recently I have a right hip replacement and left shoulder replacement. I do not accept blood transfusion for personal beliefs and any way there are many other options out there the only problem is that the doctor usually wants to use the easy and fast one. I do not know for how long I will be alive but all I wish is to see my two kids which are healthy walk the high school graduation and if possible college if I'm lucky.

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