Sickle Cell Disease


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

Comment from: Ify, 25-34 Female (Caregiver) Published: September 18

My brother has sickle cell disease. He is 28 years old. He had a partial stroke at the age of 10. He has lived with it ever since. He does have crises, and sores on his legs occasionally. But since this late August till now he has had a serious health challenge. He had blood transfusion, and his blood pressure was 210/115. He has blood in his urine, and headache too.

Comment from: A’Myah Faye , 25-34 Female (Patient) Published: December 20

Living with sickle cell anemia SS was and is not an easy ailment to live with. Sickle cell has affected my life in more than one way on numerous occasions unfortunately. But despite all the negatives of living with sickle cell anemia I found a way to live a happy and normal life. I was blessed to give birth to two young men, I graduated high school and college and now I am an advocate for every sickle cell warrior out there. Don’t let SC live your life. We can and will beat this battle!

Comment from: Carolyn, 55-64 Female (Patient) Published: August 30

I feel truly blessed in that I am 61 and a half with sickle cell (SC) disease. I had pain episodes as a little girl, but no one knew what the problem was. In my early teens, I was said to have rheumatoid arthritis. I had a baby at age 19 and a few days before I delivered, they finally diagnosed me with sickle cell disease. I didn't have a clue as to what that meant. Throughout my life I learned my triggers, such as being wet and cold, stress, and not getting the proper rest. Now that I know this, I try to do all I can to avoid the triggers. My worse time was going through a divorce in my early 40's. I really didn't handle the stress very well, and was really in denial that it was stressing me. I was in the hospital every other month for the entire year. I had gone years without crisis, and I continue to do so. I recently retired from an office job after 33 years. I had one other job where I worked 7 years, so I'm truly blessed to be retired at age 60. A few years ago I went to the ER in crisis and a nurse just went on and on that she had a sickle cell patient that was 58. Last month, I went to the ER and the doctor said he had never met a SC patient over 40 years old. I feel the key is to find a good hematologist. I had the best and he really taught me a lot about the disease. Also, educate yourself and others as much as you can. I attend conferences and do a lot of reading about sickle cell. Another key, (as a doctor told me), don't try to be a hero. If the pain is really bad, go to the ER and don't let it get out of control - avoid a hospital stay. Being able to work and have the best insurance and doctors was also a plus. I hope something here will help someone.

Comment from: alladice, 45-54 Male (Patient) Published: September 11

My experience with sickle cell anemia became easier with the more knowledge I have had over the years. My toughest years were my 20s, when I found myself going to the hospital with great frequency because of a series of crises. My late 30s and 40s were better. I only went to the emergency room every 13 months or so, allowing some hospital staff to call me the "rare" sickle cell patient. My early 50s were very tough, particularly 51 through 52, where I was hospitalized frequently because of frequent crises. Now that I am on hydroxyurea, my crises have been rare. I currently have hip pain, which I am sure will lead to a hip replacement this summer. One note though, a healthy diet is extremely important. Have lots of juices, fresh fruits, and vegetables. I am also an advocate of physical exercise, using my health club membership religiously. Meditation is good, as is good warm showers, and saunas.

Comment from: PrincessMoM, 0-2 Female (Caregiver) Published: June 20

My 2 year old daughter has sickle cell disease, diagnosed in the womb, and let me say it has been a very bumpy ride as a single mom with a sick child. I have experienced a lot so far and my baby has the best doctors. As of now she has not had any crisis, going on one year in August. I’m so happy she’s doing better because when she’s doing well so am I. She’s the most beautiful and active little girl I know, she’s very smart and intelligent.

Comment from: Quanesha, 25-34 Female (Patient) Published: April 21

I just found that I have sickle cell disease. I've been hurting in my lower back since February, the 14th of 2021. My sister passed with this but I don't know what to do from here on now. All I have been doing is keeping faith; that is all I have.

Comment from: Ayo, 25-34 Female (Patient) Published: April 09

I am a sickle cell patient trying to conceive. I understand that iron supplements are not healthy for me. Wonder what supplements I can take to get pregnant.

Comment from: Happymh, 19-24 Female (Patient) Published: August 15

Living with sickle cell anemia is hard.

Comment from: As682341, 19-24 Female (Patient) Published: January 14

I'm 24 years old and was diagnosed with sickle cell disease today. I'm pregnant with my second child. And this is my very first time hearing anything about sickle cell within me. I'm so confused because I have read several times that sickle cell is diagnosed at birth or within months after. I don’t understand how it is possible that no doctor has told me this, nor being told back in 2012 when I had my son. I am wondering if possibly it's an error. I wish someone would help me understand.


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Comment from: Sickle79 , 35-44 Female (Patient) Published: July 11

I am a 39 year old with sickle cell disease. I was told as a baby I wouldn't live to 21. Though always sickly whole life, since adult, it's been showing its appearance with acute chest pain almost killed me twice. I suffer at home due to statistics of drug users and being treated as just drug seeking. Supposedly, it is for everyone with pain (due to overdose and pain pill epidemic), and I'm paying for other adults’ behavior!

Comment from: Boosmom, 3-6 Male (Caregiver) Published: September 09

We were told there was a possibility that our son would have sickle cell before his birth. I began to research the disease before his birth. At 8 weeks it was confirmed that he had SS. My son is now five and he has a great team of providers (Hemotologist, Pediatrician and Hospital). They all say that the parent’s knowledge and being proactive is key to our son’s quality of life. He is currently on Penicillin, Folic Acid, Hydroxyurea and baby aspirin. Our hospital’s patient advocacy program works with the school to ensure that missed days do not count against him and that he receives his assignments or tutoring when required. We also show/tell him how important it is for him to exercise, drink plenty of water, rest and eat right.

Comment from: Nicole2010, 19-24 Female (Patient) Published: March 22

I am now 24 years of age and I have SC disease. I have a lot of issues due to the ignorance in not knowing in detail about having sickle cell. I started my crisis when I was 13 years of age. I was a cheerleader and I was unable to lift my legs and arms due to a crisis. I began have 104+ fevers and I was unable to walk for 1 1/2 weeks. My sister actually had to teach me to walk again due to my bones and the pain. I was began to get sick with 104+ fevers after that and missed school. Playing catch up was my life mostly. When I turned 20 I started having multiple issues with my spleen due to a flight to Savannah, GA and I began to get flu like symptoms for a week and once I returned home to TX I was rushed to the ER due to me not being able to stand up straight and the pain that made me fall to my knees. I was told my spleen was dying and until the doctors felt it needed to come out I would be on pain meds and needed more fluids than the average SC patient. I have had multiple issues with pain in my arms and legs, back and breathing issues. I am now on an inhaler due to my breathing. I have headaches like crazy, but I'm researching all over to make sure I'm doing everything correctly. The only advice I have for anyone with sickle cell disease is to make sure you and your family are aware of what it is and what it could lead to. My family is still ignorant about sickle cell disease and they don't truly understand how serious the matter can and will be. I have taken myself to the hospital mostly since I was 17. Make your family understand.

Comment from: Billibo, 45-54 Female (Patient) Published: September 11

I am 45 years old and was diagnosed with sickle cell anemia (SC) when I was five years old. For me childhood and young adult were the most difficult times. That's when I had the most crises. I was never hospitalized, at that stage, but I missed a lot of school days and was always playing 'catch-up'. I had my first child at 29 years old. Three months later I was diagnosed with aseptic necrosis at the left hip. I have only just now been diagnosed with bleeding in the eye and require laser treatment. I must say that I have been blessed, because I have only needed to be hospitalized about four times because of painful crises. Other times I am treated at home (maybe it’s because of my dislike for hospitals that I am not there more often) and also I think my pain threshold is high. I have gone for years without having a crisis. My necrosis does not bother me a lot. Sometimes I forget about it until I feel a little twinge or something. At other times I can barely walk, but still I go on because the good times are a whole lot more than the bad times. I do try to eat right and have plenty fluids and rest (sleep). I live in Jamaica so I don't have to contend with extreme cold (except A/C in some offices). I try not to physically exert myself too much as I find that this can bring on a crisis as well. I have had medical doctors look at me and try to convince me that I am not a 'sickler' because they say I do not present like the typical sicker...I look healthy. I don’t know, am I just extremely fortunate?

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.


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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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