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Starting with bleeding gums, I didn't know how sick I was. My dentist was more worried than me. But the bleeding, tender gums and the blisters stayed, so I asked the reumatologist I had to visit to check another autoimmune disorder. He didn't see a reumotologic disease in this, so he sent me home. The dermatologist I visited after this suspected an autoimmune blistering disorder right away, but she didn't get the diagnosis confirmed eventhough she ruled out all other suspects. She sent me to the Groningen university hospital on the other side of the country, because they have the center of expertise. They confirmed muco cutanous pemphigoid, a condition inbetween MMP and BP, mostly mucous membranes involved, but skin is effected also.
I had to stop my job, because I couldn't ware surgical gloves anymore, I wa a nurse. Now I am retraining to 'casemanager sickleave', I am going to help employers save money (they have to pay 2 full years of wages for sick employees!) by gettiing sick employees to start working as soon as posible, either in their own line of job or starting a new career. I have expirienced how important it is to be able to work so helping people reach a job they can perform, will be my mission.
Medically I am doing better also. Prednisolone on itself didn't work, so the doctor added Cellcept, which didn't work in me, so it was changed for Imuran, also ineffective. Finally, after a year of prednisolone, I was given Rituximab, 2 infusions, 2 weeks apart and a third one 6 months later. That is what restored my energy levels. It gave me the power to start my studies and work as a trainee to start up my own new career.
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