Tag Archives: rare disease

X Is For X-Linked Juvenile Retinoshisis Community #AtoZChallenge


Dear Readers, Here is another rare disease and one that I had never heard of before. This one is genetic and affects the retinas. Although my eye disease wasn’t the same, I do know the worry that goes with having your vision impaired and how scary it can be thinking that you might go blind.  […]
Read More »

C Is For Chiari Malformation Support Group #AtoZChallenge


Dear Readers,  Here is a disease that is not often heard of. If it hadn’t been for a young cousin of mine that was diagnosed with it then this would be the first time I would be hearing of this condition. Support groups are so important, especially if the subject is of a rare nature. […]
Read More »

A Is For Avascular Necrosis/Osteonecrosis Support #AtoZChallenge


Dear Readers, Being diagnosed with a rare disease, I have been told, is tough! There usually is little to no outpouring of attention or research money. Many doctors may not be educated on a certain rare medical condition which often causes patients to be misdiagnosed. Those suffering often go years without an actual diagnosis. There […]
Read More »

C Is For Cadasil Association #AtoZChallenge


Cadasil Association http://www.cadasilassociation.org/ The Cadasil Association is a non-profit organization working to educate and raise awareness of the rare hereditary condition, Cadasil. Cadasil is a serious disease in which symptoms often are misdiagnosed as other neurological disorders, such as MS. This inherited condition causes strokes and other impairments. It is caused by mutations of the […]
Read More »