Sickle Cell Survivors

Meet Michael from Boston, Massachusetts. He was born with Sickle Cell SS a hereditary cell mutation disorder that plagues africans and african americans all over the world. Sickle Cell SS is the most common type even though there are several types of the disease. It directly affects the red blood cells (RBCs) and how they are shaped. They are normally shaped like round smooth discs that are flexible enough to travel through even the smallest of vessels. With this disease however the RBC's have a crescent shape that makes them sticky and rigid. This is abnormal and causes the cells to get trapped in small vessels and blocks them from reaching other parts of the body. This causes severe and excruciating pain which can and does lead to damage of the tissues.

Michael's mother found out he was diagnosed with the disease when he was only a few weeks old. He had acute chest syndrome and pneumonia at a few weeks and his mom was told that he would not make it without a blood transfusion. Growing up Michael spent most of childhood hospitalized and hardly was able to see friend and family or attend school. His pain crisis's would mostly take place in his stomach. When he was about 12 years old his gallbladder was removed which he described as "the most painful thing ever".

Every sickle cell patient is different and experiences their pain in different places. Nurses have shared that they have seen common places like the joints in the legs and lower backs. For Michael his pain eventually started to travel to his feet. It became so bad during one of his pain episodes that he had to use crutches for over a week.

There are diseases like Cancer and Lupus that are finally receiving the awareness needed to conduct clinical trials and studies to discover a cure. Many sickle cell patients feel they are alone in this battle.

With nurses and doctors who in my opinion do not seem to fully understand the disorder sickle patients are subject to discrimination. Due to the levels of pain endured the tolerance for pain medications is increased over time. With no cure in place all doctors and nurses can do is fill us with pain medications during pain episodes to try and make it comfortable until it passes.

Most cannot quite understand the amounts of medication need to get through the pain so patients are sometimes thought to abuse the use of pain medications. Some doctors Like Dr.Dietrich are working with hospitals to create a seperate ward just for sickle cell patients as he notices the scrutiny the patients have to endure for help.

Michael references the difficulties of growing up with the illness as the reason for his work today as an adult. "Growing up with sickle cell is tough, I thought I was alone. I didn't know anyone else with sickle cell growing up. Thats why I started sickle cell survivors to bring awareness to the sickle cell and talk to kids who feel alone just like I did". Michael is the founder of the "Sickle Cell Survivors" clothing line and raises donations for children hospitalized and living the disease. His goal is to spread awareness of what life is like with the disease and the fact that many of us are dying with no real help to find a cure. "I want them to know they are not alone, we are not alone. We have to stick together in this battle and have each other's back as survivors of his deadly illness".

"Prodigy lived with Sickle Cell for many years before his life was claimed by the illness"

With proper knowledge, self care, and unity within this movement sickle cell does not have to be a death sentence. Share this article and Michael's information to help us to push this movement and the awareness. Michael is currently working on building an official website but is now accepting orders for shirts via Instagram DM request and payments through cash app - cash.me/$sicklecellsurvivors .