Rare Disease Day

To call attention to rare diseases, today has been set apart as rare disease day. It is a jean wearing day and supporting the causes you believe in, and I believe it was being promoted by Facebook.

My good friend, Duch, lost her granddaughter  Leah to Epidemolysis Bullosa, a disease which people who are aware of call the poor children afflicted by it( meaning EB, for short) “Butterfly babies”, as their skin is constantly breaking down at even the most light of touches. My husband’s niece, Dawn, and her daughter Kayla, both are in hospice care suffering from Mitochondrial Disease. My good friend Ivana’s Mom is suffering from Scleroderma, which is a disease that I lost my Aunt Jennie, who was my godmother, to.

It is very easy for people to lose sight of what is good, and complain about things that “bother” them.

It’s a good day to count your blessings and support, in whatever way you can, those who are suffering from diseases that are, in a sense,  eventually killing them. Hopefully cures are being worked on to spare patients and their families the pain. Also, please take a minute to hold up a prayer  or good thought for those who are the caregivers for those suffering for those rare diseases, along with the patients. It’s a long haul for everyone.

Published by

thereisnosanityclause

Sixty two year old married female, care-giving, coffee-drinking.dog loving former government employee who is writing to try to keep her sanity.

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