A question for the Sickle Cell Disease Community

Who are your biggest supporters specifically when it comes to your or your loved one’s condition? For example, your doctor, friends, family, or someone else? And what are some examples of how they have supported you through this journey?

Answers from the Community

My mother is probably the one that I would have to credit. She sacrificed so much for me even when I was sick. Sometimes she lost her job because she stayed with me and was always with me in the hospital. She made sure that I had everything that I needed and I appreciate her for that. I can never repay or express to her how grateful I am for what she’s done.

My biggest supporters, specifically when it comes to my condition, I would say my wife. She usually is at my doctor’s appointments and every hospitalization at my bedside.

My mom is my biggest supporter. She has been through it with me. She’s amazing. She’s just my number one fan. My number one advocate. She supports me 100%. I have three sisters and I mean, I get all this. I feel so bad for them because I feel I took all the attention away. I feel they were put on the back burner, but she’s been with me the whole time ever since I was born. I mean, the first story she told me was when I was diagnosed. They thought she was beating me because my joints are swollen. My hands were swollen and I was crying nonstop. So, that’s when they found out that I had sickle cell and Oh my God, it sounds so ridiculous but they thought she was abusing me. It was sickle cell. Another example is my mom… They would call the police on my mom. They would try to drag her out because she was standing up for me. I mean, when you’re in that situation where you can’t speak for yourself, for example, one time, a nurse didn’t want to wear gloves and she got so upset. She went and she cried to the doctor and the doctor called the police on my mom. It’s been more than once that she has the police called on her. They tried to drag her out when they feel like she’s in a way, but she’s just trying to help me when they’re not giving me what I need, my medicine. I mean, they make you wait, they made me wait for so long sometimes in the ER. She’s been chased by security around my bed. Oh, I could tell you so many stories. I mean, I had a stroke and I was passed out and it was because the doctor left a port that was infected and she was so fierce. She told the doctor, “You got to take this out right now.” She stood by me when I was in the coma, she was calling my name and I heard her and I woke up and I don’t know where I’d be without her. My sisters are always there for me. They take me to the ER. They help me. They stand by me. My dad, when he was living in America, he was also the person that helped me a lot. When I was living in Yemen, I was really sick. I had salmonella osteomyelitis and my bones, my bone was being eaten by bacteria. And, I couldn’t walk straight. And, the doctor, the people in Yemen were telling my family, “Just let her go. She’s dying. She’s gone.” My dad, he swooped up, took me to America and he saved my life. I passed out on the airplane. And, the next thing I knew, I woke up in the hospital with the ventilator and…it was just my mom mostly and my sisters and my dad, but I think I talk too much.

So, I do have to say my biggest supporters would be the doctors. They’re the ones that have the firsthand knowledge, or insights, or any kind of new profound information about treatments or cures for this matter. So, they’ve definitely been great support telling me all the things I can do aside from taking my medication. They’ve given me little hints and tricks and things to do when I’m suffering a crisis. So, as for primary motivators and stuff like that, it would be a physician. Secondary, would be parents as well and my aunt. They’ve been very helpful whenever it’s a crisis situation, and I can’t get up. Or if I’m confined to bed they’ve always been supportive and haven’t got agitated or upset as I figured most people would because sickle cell is a really big deal. So, it’s you’re taking care of almost like a disabled human being that can’t do much for themselves. So, it’s very, very demanding. It’s a demanding task, so I tip my hat off to all the supporters and everyone that has been there for me through those rough times.

I would say that the biggest supporters of our family, as it pertains to our loved one’s condition, have been other family members, such as parents, close friends, and just a great team of people. Some who are close, some who are not so close, have been around to advise, guide and support where it comes to our loved one’s condition. They have done so by providing either practical support, if necessary, whereby they would look after our loved one if she was unable to go to school, or unable to attend an event where everybody else needed to be, they would look after her. They have also shown support by being interested in the condition and knowing about it, educating themselves and requesting to be educated, so that they knew what to do in the event that they were with our loved one and she was experiencing health challenges. The main thing I would say is that when people, whether they be family or friends or whoever, are interested to know what the condition is about and how it affects your individual loved one, that is very supportive.

My biggest supporters have definitely been my family, my mom. She helps me out, watches the kids if I need to go to the hospital or take me to the hospital herself. She’s been doing it for a very long time. And then I’ll have to say my significant other’s also helpful, either just sitting there in the hospital with me by my side or taking care of me or doing massages when I’m achy. Then my children because they are my motivation to keep going.

I think my biggest supporter has been…has been my mom because of the psychological care and comfort and she has been there to help me understand this disease. I’ve also had several close friends who have been able to support me and make sure I’m still fine, they look out for me, those are the key things… those are the key very important people that have been there to support me in any [inaudible] and also being able to survive and navigate my life with a possibly chronic illness.

My biggest supporter is my mom, my wife and my sister. My wife has been to appointments. She’s seen me at my worst. She has advised me during my worst. She has gone through me with my temper and all my issue. My sister also has sickle cell and she just understands. My mom has always been there. Growing up in Nigeria, we didn’t have pain medication, we didn’t have anything like that, so my mom, as always, just laid there beside us and went through the pain along with us. Those three people, to me are my biggest fans and I am deaf and those are it for me.

My biggest supporters are my mother, my brothers, my nephew, my daughter, my friends, my doctors. They support me as far as my mental health, my physical health, my support system, financially, spiritually, emotionally in every way. I would not be able to go on with my journey of having sickle cell disease if I did not have them in my life.

My biggest supporter through this whole thing has definitely been my mom and my dad and my close friends and my boyfriend. They have always stuck up for me through high school, through the bullies. Some even attended doctor’s office visits with me. They are definitely my strongest support team that I have.

My biggest supporter is my family. My father has let me live at his house for about a decade now, and before that even on and off. And I would probably be in a very dire straights, or I have lived in apartments and things like that. So having roommates that are supportive has been helpful, but my family is my major financial support, which has been very important to me to maintain some type of quality of life. But it also requires us to have a lot of financial strain and arguments and things like that, which is not great with your family member. Another source of support has definitely been my friends. I have very, I would say, tight circle of friends. But when I was younger, I had a lot of friends. And they were social supports when I was in other states, or away from family. And yeah, they really did help me go to the hospital or just listen to me when I have an issue or just be accepting of a person who has a illness that is a little bit different from what they may understand or know about. So, that’s been helpful. My doctors, I would say on and off. My pediatric care doctors, as I mentioned before. Pediatric care is very robust in some areas of sickle cell patients in Cleveland, Ohio, at least. I had a great pediatric doctors, and they supported me by allowing me to get as far as I could with college and making sure that I could get access to healthcare on a regular basis so that I could be proactive instead of reactive. One thing I notice with having adult sickle cell clinics is that they are very reactive and wait until things get very bad before they respond. Whereas when pediatrics, I believe, that we had a more of a proactive approach to make sure that I was functioning at a high level, and to do school work and homework and just vocational work as well.

My biggest supporter is my sister. She has been my rock when I need to go to the hospital. She takes care of my kids. If I have to be admitted, she’ll take care of the kids or whatever the case. She always rises up and steps up without a shadow of a doubt. She’s always there for me. I am truly, truly grateful for her. I wouldn’t be where I am without that lady. They have just supported me … She has been there and been present so much so that she knows, they try to find a vein, they won’t find a vein. You need to try this option. She knows when to step in or when to be that supportive figure that I need. She talks to me. We talk things out. We go through challenges together. But she’s always there to support me no matter what. I am truly grateful for her, for her unwavering support.

Some of our biggest supporters are actually my daughter’s doctor, her hematologist-oncologist, also her pediatrician, and also her hematologist-oncologist nurse, and case worker. They actually are basically my biggest supporters that actually have given me a lot of advice on how to treat my daughter’s condition zone, and things that I should and should not do and actually being aware. One of the biggest examples that I can give is actually my daughter’s hematologist-oncologist. The nurse actually had come out to my daughter’s school, actually spoke with her teachers, and educated them on what sickle cell is. Actually has made them aware of what some of the actual things that my daughter go through on a general day-to-day basis.

My husband and my mother are my biggest supporters. They both always encourage me to do what I need to do for my health, take my medicine or drink water, or try to exercise. They make sure I’m on time for my appointments. They will keep my children if I have to do anything medical. If I’m in the hospital, they bring me food. They are my biggest supporters and I could not do life without them.

I would say my mother and my sister and two of my very close friends have been of great support to me. My mom she takes me to the hospital when I need to, because we’re given such strong drugs you’re not allowed to drive when you come back because it’ll be completely difficult. But my mom has been my strong key person in all of this and additionally one of my friends has been really helpful. When I was getting blood exchanges as a treatment last year before I got very ill she would take me to get those exchanges because unfortunately at the end of the exchange I would pass out or lose consciousness and so I needed someone to drive me and take me to certain places. Unfortunately my hospital is over an hour away and we have to drive really far for treatment, and because we have to drive really far for treatment I always need a family member with me to drive me and sit with me as I’m going through treatment or if I’m going to the ER and I need to receive pain medicine for a pain crisis.