a sad day.
So last week the E.B (my genetic skin condition) community got some sad news.
Unfortunately another all to young person past away from E.B.
Eliza was just 17.
I always try to look on the positive and live my life to the fullest. As you all know by following me I share little bits about my life but mainly focus on what I am achieving and how much I am doing.
But there is a reason why e.b is known as “the worst disease you have never heard of”
Most of the time surviving e.b is incredibly hard. Sadly most still do not live very long. Life with e.b. Well imagine the smallest most insignificant part of your day being filled with the most torturous / constant pain.And the hardest parts of the day. Well multiply that by 100.
A normal day can consist of blood transfusions just to survive, Operations that are complete experiments with unknown outcomes, complications from eating, walking, sitting or doing anything at all. Most have to go through a morning bandage routine that simply put the average person will never understand or comprehend how full on it is.
That’s all while your growing up and just trying to fit into a world that judges us most of the time purely based on how we look.
It is the worst disease.
If you need a last minute gift for someone or you are stuck for a present for someone hard to buy for consider donating to debra to help out all the kids, adults and families living with e.b.
Just click on this link and select the dollar amount.