Living with a blood disorder by comille begnaud
| Sickle Disease | Living with Sickle Disease |
| Parents with sickle disease patients | hemophilia |
Hello my name is Comille but my friends call me Neil. I am 12 will be 13 on the 30th of August. I was born with this disorder called SICKLE BETA ZERO THALASSEMIA. This is a form of SICKLE CELL DISEASE. I don’t like this disease because I have a lot of pain all the time. I have a lot of medications I have to take all the time just to try and keep me healthy. I get scared sometimes because I know how serious my disease is but there are times when I am on top of the world because I have such great doctors and nurses and friends but most of all a mom who always makes things better for me when I hurt. See, my blood gets stuck in the veins and clog the joints because instead of my blood cells being normally circled they are shaped like bananas.
On some days I make a lot of the bad cells and they send me into what is called a crisis. If the crisis is too bad I have to go into the hospital and get antibiotics and fluids and stronger pain medications to try and make it all better. I cry when I am in pain. My mom is always so positive. She always tells me everything is going to be alright and don’t worry, she is here for me. This makes me feel better. Sickle cell is very painful for some of us and yet others may not have as many crises. Some of us spend a lot of time in the hospital and others not even a day. Some live longer than others and some have already passed on to another life.
I don’t like this disease because it stops me from playing sports. The good thing is I can do music and this disease can’t stand in my way. I can become president if I want to and sickle cell could not stop that. Patients with this disease or any disease should always listen to the advice of their doctors because they only want to help. We need plenty of fluids and rest. We cannot get over worked because it can cause problems. We have to be careful of the cold because it can cause pain. Some have problems with their hips and others have problems with major organs. All of us are at risk but if we take care of ourselves we can survive this thing. I want a cure and will one day open my own clinic or center for kids with this disease.
The good thing about this disease is we get to go to special camps like Dreamstreet. The people of this camp really love us and that makes us feel really great. Kids with this disease can get a lot of infections and things that are not good, so for a lot of our life we take antibiotics. We have to take a lot of tests to see if our heart is beating right or if our lungs are breathing right. We can get strokes so we have to take TCD’s which are transcranial Doppler tests. They tell the doctors if we have blockages in our brains.
Some of us are on blood transfusions because it helps you feel better but the bad thing is your iron level goes up really high and so we have to take this medication call desferal to bring the ferritin level down. I use to get transfusions but not anymore because I started getting antibodies, so they stopped my treatment. Now I am on this medication called Hydrea. It’s a drug used for cancer patients but they give it to sickle cell patients who have a lot of pain crises and I get to take this and it really helps me. It doesn’t take away the pain, I just have less. Well take care of yourself fellow hospitalteers. If you ever want to chat feel free the contact me.
I love you all, COMILLE
Comille "Neil" Holland - Begnaud
"Just A Word From A Patient"
Hello friends and family most of you know me as Comille but you can call me Neil. I am an 11 year old boy but will soon be 12 in august. I am in 6th grade and will be going to the 7th.
I am a rapper and actor something I enjoy very much and intend to make this my life long career. I am working on my first solo album now and it will be out in 2001. This album will also feature my friend Akeemia Ramsey who had enough guts to do a rap with me called are you my friend and my producer Mick Washington. I also have a cable show to do with my producer Mick. We will be a special guest so I will keep you informed.
I am also a patient at Long Beach Memorial's Miller children's Hospital, and the reason for that is I was born with a blood disorder called Sickle Beta Zero Thallasemia, which is a form of sickle cell disease. If you just look at me you would not be able to tell unless you actually see me go into what is called crisis.
A crisis is what us sicklers go through when our blood decides it wants to stick together. It is very painful and can strike anywhere in the body so we have to take a lot of what my mom calls precautions which means we have to be very careful of a lot of things. I have a lot of crisis but I don't let them stand in the way of living. I have great doctors and they only do what's best for me and I love them for that and I trust them very much like I trust my mother.
Dr. Groncy is the head of hematology and the word hematology means h having
to do with the blood. Dr. Groncy has pretty eyes and guess what they are not the same color which makes her special. At one time Dr. Groncy put me on blood transfusions and they really made me feel so much better.
I didn't have so many crisis and when I did have them they were not that very painful and not long but the best thing of all is I didn't have to go into the hospital. But what happen with the transfusions is she had to take me off because my body started making what is called antibodies and they would start to reject the blood if she continued to give it to me.
Now I have been off transfusions for over a year now and guess what I started getting sick again because I started making sickle blood again. So now Dr. Groncy has put me on a new medication that they normally give to patients with cancer and adults with sickle cell disease and its called Hydroxyurea. I was scared at first because I looked this medication up on my computer and read about it but I still didn't understand. But when I went to Dr. Groncy's office she didn't even talk to my mom about it she talked to me about it and that made me happy because she let me make the final decision whether or not to try this drug. I know she wouldn't do anything to hurt me so I decided to take the medication. Now once a week I have to get my blood tested and every 4 weeks I have to see Dr. Groncy and increase my meds. until she is happy with my progress. It will take about 6 months to a year before everything is where she wants it to be.
I was having side affects the first few days but now they are gone. My biggest dream is to one day be able to have a bone marrow transplant like some of my friends, but until that day comes Dr. Groncy knows what's best. I am also thankful for friends like Dr. Teddy Softley Ph.D. who has always been there for me not only as my psychologist but as my friend. She taught me how to relax and deal with my pain so that I don't have to take so many drugs and now I don't cry as much unless it is too bad, and Joetta who has a lot of initials behind her name but she should be a doctor now because she is just like a doctor I think it's called a nurse practitioner.
Joetta never hides anything from me when it comes to my health and she always makes sure I understand what I am dealing with. My nutritionist Shahin who always has time to give me a lesson on the importance of drinking my ensure plus strawberry flavor. She makes sure I grow and eat properly, also Dr. Finklestein who makes sure my mom gives me a hug everyday and she has not stopped yet, and Dr. Patel who always seems to find time to tell me a joke or look for Mickey Mouse in my ears.
There is a new Doctor his name is Dr. Roberts. I only met him a couple of times in the hospital and he is very nice too and I know we will be friends too. Sylvia Ramirez I miss you at Jonathan Jaques but I am glad you are still in the hospital buddy. I love all the nurses who have taken care of me in the past, the present and who will take care of me in the future.
I am very thankful for my best friend who is also my mom. I can't begin to say how much I love her. She is the greatest person I know. She never gives up on me and always has a kind word to say no matter how bad I may feel or how sick I get she never leaves me. She makes sure I have everything I need even if she has to do without something she might want.
Momma I just want to say I love you and I have a special surprise for you but you have to wait for the album.
WHO AM I?
Written by: Comille Begnaud
June 6th 2000
Sickle Beta Thallasemia Zero
My name is Comille and I am in 5TH grade.
When I was born I was diagnosed with a blood disorder called Sickle Beta Thallasemia Zero it is a form of Sickle Cell Disease. It can be very painful and I have to go in the hospital a lot because of pain or sometimes fever. And I get a lot of medications to make me feel better.
I sometimes get a lot of infections and they make me feel yucky. I had to have surgery to get a portacath put in my chest. A portacath is something they put in you so you don't have to keep getting stuck with needles. I got stuck so much my veins were not too good anymore. They also use the port to put blood into my body and to give me blood test.
I now come home to finish my desferal. That is the medicine they give me for iron overload. The reason I use to get blood every 3 weeks is I had a small stroke in August and my doctors said it would help me not to have another one. I like my doctors because they fought to keep me alive they never gave up on me. I get to do a lot of neat things too. I go many places and this year I am now working on my very own music CD. I am a rapper and I want the world to know just because I have this horrible disease does not mean I have to let it beat me. I go to a school for the performing arts and I have also performed in many shows as well as performing for my doctors. My first performance was at Long Beach Memorial Hospital at a function they were having one February. Dr. Finklestein put me on a chair and allowed me to do my song that I wrote about my disease and my doctors and I have been performing ever since. I have even done a Peter Pan commercial and I attend acting classes. I will be on TV in September 2000.
I hate having this disease it keeps me from playing like other kids and I had to grow up faster and stay in the hospital a lot. But now that I have this port I wont have to stay in and I wont miss as much school. I no longer get blood transfusions because my doctors could not match my blood anymore. I started making my own antibodies and so now I have to be extra careful not to get sick. I am getting ready to go to camp in June and I hope I don't get sick and have to go in the hospital before June 18th because that will be a year I have not been in the hospital. I have a lot of pain but Dr. Teddi Softley has taught me how to deal with it more.
You cant catch Sickle Cell by being my friend You get Sickle from your parents. Each parent has to have the trait. In my case 1 parent had the trait for Sickle Cell and the other parent had the trait for Beta Thallasemia Zero so this gave me Sickle Beta Thallasemia Zero.
My blood doesn't form like normal blood it comes out looking like a banana or a sickle they use to cut sugar cane down with. That's where the name sickle comes from.
When I don't get enough oxygen in my blood I have a crisis and it hurts bad. Sickle Cell is not just in black people it is in all colors of people.
There are 3 common types of Sickle Cell Disease:
1) SS (Sickle Cell Anemia)
2)SC (Sickle Cell Disease)
3)SBT (Sickle Beta Thallasemia)
They all cause pain and problems but some are worst than others. Some of the problems with this disease is:
1)pain
2)strokes
3)more infections
4)leg ulcers
5)bone damage
6)yellow eyes (jaundice)
7)gallstones
8)lung blockage
9)kidney damage (loss of body water)
10)painful erections in men
11)blood blockage in the spleen or liver
12)eye damage
13)low red blood counts (anemia)
14)delayed growth
Sickle Cell patients should be under the care of a doctor who works in blood disorders. They should take there medication everyday. Parents have to check for fevers and make sure the kids drink lots of water and not to get too hot or too cold.
We have to avoid exertion and stress get plenty of rest and go to the doctor a lot. I always have to watch for fevers, chest pain, shortness of breath, too tired, stomach swelling, and bad headaches, weakness or loss of feelings, pain that will not go away at home vision change. Some kids are now able to have a bone marrow transplant. They are very lucky. 4 of my friends from my hospital have had the transplant and are cured but they have to be careful having children because there kids can still get the disease. If I am ever cured I will adopt kids. I hope I could have a transplant but they are not doing my type of sickle cell so I just have to hold on and be strong for my mom. My mom is a strong woman she helps me with everything and never gave up on me. She is determined to get me a cure she said. She is my best friend and I am her best friend.
Soon they will find a cure and I will be healed. And I will have the biggest party in the world. I will have all my doctors there just like when they honored me I will honor them. I was the first blood disorder patient ever to be honored that was great. My motto it please don't treat me different just because my blood is different because that is prejudice just like racism. We are all the same and all I want it a chance to be a kid sometimes. I am glad I get to go to camp dream street because it's really where a kid can be a kid.