My name is Wande Soluade and I am a 28yr old female living with Sickle Cell Anemia (Sickle Cell Disease~SCD). There are different types of Sickle Cell but the type I suffer from is SS. SS is the most severe form of the disease.
When I was younger I would get hospitalized every 6wks and I would be in the hospital for the maximum of 2 weeks. I would hide my illness from friends at school because I was afraid of what they would think of me. No one at school other than the nurse and a few teachers knew I had this disease. I always said this disease is not going to dictate who I am, my life, and how I enjoy my life! Finally, in my senior year at H.S. I shared with few friends that I had SS. To me that was the beginning. The beginning of making people aware of what SS is and what SS does! I began to open up.
When I went to college it was extremely hard for me to make it to class, or even do the work assigned to me but somehow I made it! Thank God! It wasn't easy (at times I put too much on my plate) and I had difficulty with my GPA but in the last two years in college I was placed on the Deans list despite my illness! Once I graduated from college, my pain crises also graduated to another level of intense pain.
Last summer I was hospitalized for 3months which included me being in the ICU, celebrating my birthday in the hospital, and missing the whole summer. In the past 3 yrs my hospitalizations go like this: I'm admitted into the hospital and am there for at least 1 1/2--2months. Once discharged then two months later I'm admitted back into the hospital for about 1 1/2-2 months. This has been a constant cycle for about 3yrs now.
As a result of the frequent hospitalizations and severity of pain I had to stop working as a social worker, of which I loved doing. I also had to return my car to the dealer, move out of my apartment and move back in with family. Sickle Cell Anemia has radically affected how I live my life. I've had my gall bladder taken out at age 9 when it's usually taken out in others who don't have SS at a much older adult. I've also had surgery on my left shoulder due to Avascular necrosis.
Avascular necrosis (AVN) is a disease resulting from the temporary or permanent loss of the blood supply to an area of bone. Without blood, the bone decays and the bone collapses. If AVN involves the bones of a joint, it often leads to destruction of the joint. For me it is both my shoulders and my back. Because of my AVN, I have had surgery on my left shoulder. I've yet to have surgery on my right shoulder. The end result though is that I'll need both my shoulders replaced. Imagine that! The doctors suggested I have them replaced because of the affect AVN has had on them but I feel I am too young to have them replaced. I feel that way because the replacement will only last for about 20yrs. If I do have them replaced now it would only last till about my 50's. So I decided to wait till my late 50's to have the surgery done. Waiting till my 50's would have them last to my 80's.
Not long ago I was released out of a 2 month stay in the hospital. During my stay in the hospital my knee grew swollen with fluid in it and I began walking with a cane. Due to the severity of my illness, nurses had to come to my home to aide me. Additionally, I received home health aides to assist me in my daily life.
Many ask me what my pain feels like. Depending on where my pain is at times determines what kind of pain I endure. When I have pain in my legs, back, and shoulders it feels like several knives being stabbed into me simultaneously and none stop! When the pain is in my stomach it's a dull/pressure pain that feels like a person trying to push their fist through a balloon without sucess. My shoulder pains also feel like two rusted metal rods grinding against each other. My back pain feels like having lightning rods shoot up my back-paralyzing me in pain! The pain that I go through is called having a CRISES. It's so intense that the description above can't even touch or come close to explaining how deep and hurtful the pain is. In the midst of having these crises I can't breathe properly because of its intensity.
THE REASON I AM BEING SO BLUNT AND OPEN ABOUT HOW SICKLE CELL ANEMIA AFFECTS ME IS TO MAKE PEOPLE AWARE. MOST PEOPLE ARE AWARE OF HOW CANCER AFFECTS A PERSON BUT MOST ARE UNEDUCATED/UNAWARE ABOUT SICKLE CELL ANEMIA AND HOW IT AFFECTS THOSE THAT SUFFER FROM IT. THAT IS WHY I CREATED THIS BLOG.