A 7km fun run has been organised in Mojácar for sufferers of Wolfram Syndrome this Sunday 30th March.
Wolfram syndrome, also called DIDMOAD (Diabetes Insipidus, Diabetes Mellitus, Optic Atrophy, and Deafness), is a rare genetic disorder, causing diabetes mellitus, optic atrophy, and deafness as well as various other possible disorders.
The Spanish social security cutbacks means the 45 sufferers of this syndrome across Spain no longer get help with the side effects of this syndrome. It costs them about 12,000€ a year in medication that is no longer paid for by the health service.
It’s been organised with the Spanish Olympic medallist Paquillo Fernández who will be present on the day to run along with the fund raisers.
Surprisingly enough, Spain’s foremost clinic specialising in the treatment of this syndrome is based in our local Huercal Overa hospital, under the direction of Dra Gema Esteban. 