Viewer Comments: Sickle Cell Disease - Describe Your Experience

Patient Comments & Reviews

The eMedicineHealth doctors ask about Sickle Cell Disease:

Sickle Cell Disease - Describe Your Experience

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

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Comment from: smalls, 35-44 Female (Patient) Published: December 16

I am a 44-year-old female living with sickle cell. I was just diagnosed with the disease a month ago. I started having headaches, which I never get. My shoulders ache, and my fingers, and toes tingle. I also work in the operating room where it is very cold. I am afraid I may have to give the job up. Finally, I love the outdoors such as riding bikes going on long walks, and exercising. I have a supportive husband, and will continue to strive harder to survive.

Comment from: 7-12 Female Published: January 31

My 12-year-old daughter has sickle thalassemia disease. I as a parent understand how it feels to see your child go through rough times. At first it was so frustrating and overwhelming. She's been in and out the hospital since she was a year old. She's had a lot of blood transfusions, pain, and crises, and at age 5 had a spleenectomy. I did lots of reading and research about her condition and when I go to her hematologist, I always ask questions. When they try to give her new meds, I always do my own research then object or agree to it depending on what I find. I don't treat her any differently and teach her that she has to strive for the top in life. And I never allow her to use her condition as an excuse. She's so much stronger than I am. I admire her for that.

Comment from: A.Martin, 35-44 Female (Patient) Published: October 11

I have suffered with this since age four. I am now 36 years old and the pain crisis are less frequent, but much more intense then when I was a kid.

Comment from: INFINITY, 35-44 Female (Patient) Published: February 08

I have been suffering with sickle cell since I was about a year old. I am now 36 and I had my first child at 20. Having sickle cell, I'm not supposed to be pregnant or give birth. I am always in crisis now and nothing seems to help. I always try to keep my stress down and get proper rest and eat the right foods, but I always seem to be in crisis.

Comment from: RoseBud, 35-44 Female (Patient) Published: April 15

I am a health sickle cell disease patient. I had my first crisis at age nine and I was unable to walk for a week. During my teens and into my 20s, I had frequent crises and other issues, but after educating myself, I learned all the things I need to do to live a healthy life. Now my sickle cell crises are few and far between. My advice for other sickle cell patient would be to know all you need to know about your disease and to locate a good hematologist. Most of all, enjoy to the good days!

Comment from: mama, 25-34 Female (Caregiver) Published: April 13

I have an eight-year-old child with sickle cell. It was determined at birth that he had sickle cell. It is heartbreaking to see my child go through this crisis. When my son was five years old, he had a sickle cell crisis and the doctors told me that he might have a 50/50 chance of surviving. My heart just broke in half. The day went by and there were no changes in my son's health. The next day, doctors were preparing to transfer him to a pediatric hospital for an operation. They wanted to do one more X-ray, a little more blood work and one more test on his oxygen level. Guess what? Everything went up to normal levels and he did not need surgery! He was later released on a perfect Halloween Day. As of today, he's going through a crisis and I'm stressed out, but I have to be strong for him. I advise parents of children with sickle cell, do not take this lightly. Our children go through a lot of pain and need us by their side.

Comment from: Penny39, 25-34 Female (Patient) Published: November 29

I'm 31 years old and I have Sickle Cell type SS. My parents found out that I had the disease when I was 6 months old. They said since I was born I would just cry and cry sometimes with the slightest touch, but they had no idea why. Till one night I started to run a very high fever. By time they got to the ER it was already 105.0. My mom said a new doctor was there from New York and asked her did she ever heard of the disease because he was sure that's what I had. So to make a long story I did. I ran a fever of 103.0 to 106.0 for 2 whole weeks and was hospitalized for almost 3 months. When I think back from till now, I never had it easy when it came to this disease. I was sick enough to be flown from one hospital from the next at least three times, died 4 times (but was ALWAYS BLESSED BY GOD TO COME BACK), hospitalized over 90 times, and over the last 3 years I have been in the hospital at least once every month. But with GOD'S help I'm still here and making it. I'm married to a wonderful man who has stood by me from the very beginning and we have a 9 year old boy and a 4 year old girl.

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Patient Comments & Reviews

The eMedicineHealth doctors ask about Sickle Cell Disease:

Sickle Cell Disease - Treatment

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

Sickle Cell Disease - Symptoms

What were the symptoms of your sickle cell crisis?

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