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

Question:

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

Comment from: Poster Child, 45-54 Female (Patient) Published: December 23

I was in the hospital a lot as a child, and I missed a lot of school. I had a sickle cell anemia crisis every 3 months when I was in my 20s. In October 1993, I was diagnosed with iron overload, and hepatitis C as a result of the many transfusions I had. In 1997 I started hydroxyurea and I was crisis free for 5 years. I am now in my 50s and I'm living the best life that has been allowed me.

Comment from: African, 45-54 Female (Caregiver) Published: March 26

I am a mother of 4 girls. My second girl and the other girl is a second twin meaning I have 2 girls with sickle cell anemia. They were diagnosed during their first year. The first year was terrible most of the time, they were hospitalized for chest crisis, joint crisis and infection. They had to be on several blood transfusions and other routine medication; until they were placed on hydroxyurea. Thank goodness they are super stable! There’s been no hospitalization for 2 to 3 years now or even more. Good diet, moderate exercise, love, care and support from their other two sisters has being amazing. I want to conclude that if you or kids need to start hydroxyurea I will say go for it because the doctor monitors your blood level constant to determine the right dose for you and subsequent follow up of your dose of titrate therefore, no need to be afraid for side effects. It has greatly reduced the frequency of crisis.

Comment from: alladice, 45-54 Male (Patient) Published: April 22

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: studygirl27, 25-34 Female (Patient) Published: August 25

I'm a 27 year old African-American female dealing with sickle cell anemia (SS). I had a rough childhood full of hospital stays and having my spleen and gallbladder removed. Even now in my late 20s I'm having to go to the hospital 3 or more times a year. I hate going to the emergency room because even though the nurses and doctors are supposed to help it feels like they are looking at me like I'm not in pain and I'm just a patient seeking pain medication. I just wish they could be in our place and see what we live and go through on a daily basis with this disease.

Comment from: joyce, 3-6 Male (Caregiver) Published: July 08

My son was first diagnosed with sickle cell anemia at age 4 but when he shows symptoms l give him a herbal blood builder and it relieves him from the pain. However, someone introduced Dioscovite to me. I have just started using it will update you latter.

Comment from: My 2 cents and more, 55-64 Female (Caregiver) Published: April 08

I am wondering why oxygen therapy is not being used in the prenatal stage as a corrective treatment option for moms and babies prior to birth, since it is a lack of oxygen that contributes to this sickle cell disease.

Comment from: dorica, 19-24 Female (Patient) Published: February 24

I am now 23 years old and I have a lot of experience with sickle cell anemia because I have had this problem since I was a child and I am happy with it because I live a life like other people.

Comment from: j, 19-24 Female (Patient) Published: April 14

I have living with sickle cell for 20 years. It’s not much of a serious illness, I don"t drink loads of water or take medication. I live in cold country and last time I was ill was 4 years ago. In my childhood times I swam a lot, ran a lot, and nothing happened. The only problem I have is every flu that"s around I get it; which makes me feel so insecure because I work and don"t want to get tired.

Comment from: Shamyra, 25-34 Female (Patient) Published: November 01

When I was a little girl, all of my friends would laugh and talk about me because I have sickle cell. Now that I am 27 years old, I no longer experience it, and am able to embrace my disease and not be ashamed of it. Sickle Cell affects my life tremendously. It causes very bad pain that causes me to be hospitalized for about a whole week. Even after I am discharged from the hospital, I am still in pain. I have to miss work and worry about getting fired. I have things that I absolutely love to do but can’t, or if I do I have to be extremely careful. I love to swim, but sometimes can't because I know that after I am done swimming, my crisis will start. I will have to take Motrin before I even get in the pool to help avoid the crisis. I can't run or else my crisis will start and I will run out of breath fast. I can’t travel by airplane; I can but if I do, I need special attention such as oxygen or else my crisis will start. Being cold always triggers my crisis. I want to be a police officer, I am scared that after I am finished with school and then get a job in my field, I won’t be able to, because being a police officer requires you to run, be tough, etc.

QUESTION

Sickle cell disease is named after a farming tool. See Answer
Comment from: Bumblebee, 13-18 Female (Patient) Published: November 25

Well, I'm a teenager and I have sickle cell disease. So far, I've had a pretty painful childhood relating to sickle cell crises and hospital visits. When I was 9, I had my spleen removed, and somehow then the crises have become very manageable, with bad episodes only once every year, if at all. All I need to take is Tylenol for the pain in my feet and arms, and that's it. I figure that sickle cell can become very manageable, but it depends on the patient and the severity. Looking at all these comments have helped me not to lose hope, seeing people with sickle cell living longer and longer. I feel very lucky to be as healthy as I am today.

Comment from: Billibo, 45-54 Female (Patient) Published: June 03

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: 25-34 Female (Patient) Published: June 03

I am a 32-year old African American female with sickle cell (SS). My experience has been generally good. I suffered with crises mostly in my teens and early 20's. I find that 'triggers' (cold, wet, stress, infection) vary for each sickler and it is best to know your own triggers to help in pain avoidance or management. In my 30's the frequency and severity of the disease has decreased. I find that a balanced diet, lots of daily fluids, vitamins and rest help greatly. The herbal supplement of garlic helps me personally (possibly because it thins the blood slightly so it can flow easily). The disease is very manageable and need not be frightening or life-threatening. I have no children yet and have concerns/fears about pregnancy complications however I am encouraged by the stories of other sicklers.

Comment from: lukhan77, 25-34 Female (Patient) Published: April 22

I am a 32-year-old African American who has sickle cell anemia. All my life I have struggled with this disease. It's very painful when you have a pain crisis. One time that I can remember is when I went to the emergency room and they gave me two rounds of pain medicines that didn't help. I was told that it's impossible to still be in pain. They discharged me and said that I was a junkie. I couldn't believe what I was hearing. I tried going to another emergency room and had to wait more than four hours to be seen. Since then, I have relocated to Tennessee, and the care that I receive here is overwhelming. I have never seen such great medical staff that takes the time to understand what I'm going through. I have three healthy children. What I have learned the most about having this disease is not to let your sickness get the best of you. Drink plenty of water. Exercise daily, even if it's just a walk in your neighborhood. Join a support group in your area; it really helps to be round people who understand your pain and don't judge you for being an outsider. One thing that I struggle with more than anything is holding a job. I start out good, but my attendance affects other co-workers, so I get let go.

Comment from: jackie, 7-12 Female (Caregiver) Published: January 08

My son was diagnosed with sickle cell disease at the age of 9 years and before that none of us suspected anything of the sort. We have always maintained a healthy diet and often use Seven Seas cod liver oil. Maybe it has also helped but I am thankful for his good health.

Comment from: skinnyminny, 35-44 Female (Caregiver) Published: January 13

We have recently buried my father, a sickle cell anemia sufferer for many years. He passed away on Jan. 8, 2010, at the age of 67. He lived a long and productive life, despite the many hospital visits. His faith in God, an extremely healthy diet, and unwavering family support allowed him to live to such a ripe old age, all things considered. To all those who are at the beginning, middle, or end of your journey, look to a higher power, as I have and continue to do so. I have just had a niece (8 years old) diagnosed with sickle cell disease five months ago. And it begins all over again …

Comment from: shantiecutie, 13-18 Female (Patient) Published: November 04

I’m only 14 now, but since I know I have sickle cell, and I know how to control it, it's much easier for me to deal with it. Sometimes I have problems at school because my school is literally 1/4 of a mile long and I have trouble walking from one class to another, but my teachers know what’s wrong with me if I don’t look like my normal self. And missing school is always hard because I have to catch up, and when I do come back, all the kids ask why I was out, and I can't tell them the truth because I'm scared they might not like me anymore. I know it's stupid, but that’s how I feel.

SLIDESHOW

Anemia Symptoms and Signs, Types, Treatment and Causes See Slideshow
Comment from: zecdo, 35-44 Male (Patient) Published: October 08

I’m an African with sickle cell disease. I’m 38 years old. I spent most of my childhood in and out of hospitals, though, when I turned 30, I rarely had pain crises. The only seriously issue I had was priapism which ended up ruining my privates. Well, I had an operation and had an alpha mentor tube transplanted. Now I have a son who also has sickle cell, but I did not know my wife was a carrier until when she was pregnant. Well, my son is doing really fine. He is on folic acid and amoxcillin daily.

Comment from: lisa, 3-6 Female (Caregiver) Published: October 07

I have a 4-year-old daughter who was diagnosed with sickle cell when she was 24 months of age. She is presently on Amoxil and folic acid twice daily. When the crises occurs, it is sometimes very hard to manage the pain. I heard about the pediatric HUGS program that is still on trial but is working in toddlers and infants. If anyone who is trying this drug and has information, please blog. I just want to be fully aware.

Comment from: sapeachy, 35-44 Female (Patient) Published: May 20

I am a 41-year-old woman with sickle cell disease. When I was a small child, no one could tell my mom why I was having so much pain. I found out eventually when I was in the third grade. I have been in and out of hospitals all my life. I learned to live with my sickness, and I have gotten better over the years. The only thing I hate about this disease is that when you go to hospitals to get help, you have some nurses and doctors thinking you just want the pain medicine. I just want the pain to go away. I have a supporting family that helps me through it all. And I also have my heavenly Father who I know is a healer. I tell everyone I meet that God is a healer, and I'm still here because of Him.

Comment from: wildcardma55, 45-54 Female (Patient) Published: February 24

When I am going thru a crisis, sometimes the medical community treats me like a drug addict. All I want is the pain to stop. As I have gotten older(54),it seems I am having sideline problems(severe back, hip, arm and leg pain)and my primary physician won't prescribe anything but Tylenol 3's(which don't work). I do go see a medical oncologist, but those visits are far and few. I would like to understand it more and would love to find out how I can manage my pain better. When I was at the doctor's the other day, I was told by one of the physicians, that they were going to start me on the hydroxyurea, but reading up on this medication has scared me to death and from others who have the same condition as I, it sounds as if the side effects are horrible.

Comment from: treeciecup, 19-24 Female (Patient) Published: February 22

I am a 24 year old African-American female. I was diagnosed with having Sickle Cell Anemia (SC) by a Nigerian doctor who had seen similar pain episodes in other Sickle Cell patients. My childhood was riddled with hospital visits, almost every week. Although my crisis are rare now, I am still in constant pain, but I ignore it because it is manageable. When I was reading other people's experiences, they so closely resembled mine. I was thought to be a drug addict, dealt with always having to catch up in school (I almost did not graduate from high school), and having to explain to too many teachers about the disease without them ever really understanding it. I thank God because I have been through a lot in my 24 years and I'm still alive, married and happy. I have had acute chest syndrome twice, pneumonia plenty of times, and other complications. About five years, I was put into a coma because my body began shutting down on me (it couldn't handle the numerous crises that I was having all at once). The doctors had told my mom to say her goodbyes and make the necessary preparations; I was 19 years old. But, God pulled me through and I woke two weeks later. After that episode, it was decided that I would began doing blood exchanges every three weeks to help with the pain. Since I've started the pheresis program, everything has been going well and I thank God for this procedure.

Comment from: Theresa, 25-34 Female (Patient) Published: January 27

I'm a 32 year old female with 2 children. I’ve been blessed where I haven't been in the hospital for a year. Yes, I still have aches and pains (mostly joint pain) here and there. My last episode was very painful. I don't remember having one that bad since I was in grade school. I really thank God for my doctor. She never had the, "I'm the doctor, you're the patient", attitude with me. We've always worked together on what's best for me. Sickle Cell can be very stressful. Especially dealing with the wrong doctor (someone who knows everything and not willing to listen).

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.

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)

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.

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.

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.

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.

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.

Comment from: lovingmom, 13-18 Female (Caregiver) Published: June 08

My daughter is 14, was born in India and diagnosed with SS when she was about 5. She has had some problems, mostly bacterial infections but maintains fairly good health. Last October she was diagnosed with Type 1 Diabetes and I'm concerned about maintaining these two illnesses. She also has the situation that her heart is growing too fast. It is the size of a grown man.

Comment from: femi, 25-34 Male (Caregiver) Published: June 03

I’m a doctor and I have the sickle cell trait. My girlfriend does too. I see sicklers everyday in my job and its difficult having one as a child. It is an endless barrage of hospital visits. I love my girlfriend very much and it is ironic that I’ve spent a part of my practice advising couples with the trait not to marry and now I end up on the other side of the table.

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