Common questions asked of me are, “How do you get sickle cell disease”, “How long have you had sickle cell disease”, “Are you sure you have sickle cell disease, because you don’t look like it”. As sure is the day is long and the sun comes up, believe me my body lets me know every day I live with sickle cell disease.Sickle cell disease is an inherited blood condition that is not contagious. The genes that are passed on from both parents to child determines what type of sickle cell disease the child will or will not inherit. There are several types of sickle cell disease, but the most common are: Hemoglobin SS,
It’s a matter of probability, chance, or a roll of the dice! If both parents have the trait, they have 25% chance (1 out of 4) of having a baby with sickle cell disease. If one parent has sickle cell disease and the other parent has the trait, they have a 50% chance (1 out of 2) of having a baby with Sickle Cell Disease. If one parent has the disease and the other has no trait, each of their babies will have a trait. When one parent has the trait and the other parent has no trait they have 50% chance (1 out of 2) of having a baby with Sickle Cell Trait and 50% chance of having a baby with no trait. However, in all of the scenarios each time they get pregnant, they have the same chance, meaning the probability remains the same.
Most states now perform a simple blood test called the hemoglobin electrophoresis when babies are born. This particular test will tell the parents if the baby is a carrier of the trait or the disease. The test also informs the doctor and parents if the baby has any other hemoglobin. Believe it or not everyone who goes outside and tans brown should have this test done on them at least once in their lifetime by asking your doctor to perform it, or go to any Sickle Cell Foundation. If you are already pregnant and you’ve never been tested for sickle cell disease you should ask your doctor to perform a test called amniocentesis to determine if your baby will be at risk of having sickle cell disease. Most doctors perform this test on soon to be mothers if they fall into the category of possibly having sickle cell disease.
When children living with SCD become adults it is a hard transition because the pediatricians are more hands on with SCD patients. The transition can sometimes difficult because it is hard to find a hematologist to build a relationship with immediately because the pediatrician has known the young adult their entire life. Only recently have pediatricians insisted on sicklers finding a new SCD doctor (hematologist).
This year we’ve decided to help someone who lives with SCD instead of moving forward with a red carpet event. A 35 year old young man who is the father to three; he is a classroom parent on off days, he goes on just about all of his children’s field trips, helps with homework, and supports them all in extra curricular activities and sports. He is a protective brother, helpful son, awesome friend to many because he never meets a stranger, and a giver when he has nothing for himself (financially, mentally, spiritually, nor physically). He has worked three jobs at one time to make ends meet. It has been a struggle for him as he tries to work through the pain to make ends meet financially. He was admitted into the hospital over three months ago and has not seen home since being admitted. Many don’t understand that it is hard to keep a job when the pain you feel is like glass traveling through the veins. He has endured many complications due to SCD including 2 strokes, many blood transfusions, loss of hearing, almost losing his eye sight, and infections he possibly contracted by working in the medical field. This long stay in the hospital has left him with no ability to walk, he has lost 50 pounds or more. At 6’8” he is known to most as the gentle giant, always making others laugh, never wanting anyone to feel down and sad. His joking starts before he breaks down in tears because of the pain that many sicklers describe as glass traveling through the veins. As I sit in his hospital room he cannot even make it out of bed on his own. He has not seen his home, that needs so many repairs, in over 3 months because of this long stay in the hospital.
As I thought about September being Sickle Cell Awareness month I decided to possibly cancel an event and pour as many resources as possible into this young man’s 2 bedroom home so that he can maneuver in his home upon his return. It amazed me how many people love him so much to come together on September 29, 2012 to try to do an “Extreme Home Make Over” as best as we could. Even a contractor, Brian of AA Painting and Contracting, SYG Social & Savings Club, and so many friends who came together to make this young man’s who may eventually walk on a cane, handicap friendly. We decided to work with very little to make a difference that will be so huge for for him, his children and his best friend (his dog). On September 29, 2012 we spent the first day making crucial repairs the focus. Brian of AA Painting and Contracting purchased and provided many of the building materials and some appliances as well. We know this will be a 5-7 day project with so many more things that need to be done. We hope on the day of his return we can say “Move That Bus!"