- Whipple's disease
- Interviews
Meije's interview
How did all start?
It began with a big event at the end of 2013. I had a stroke (CVA) and lost partial sight. Stayed in the hospital for a couple of days and tried to continue life. But is was a struggle. Getting used to the consequences of the stroke but also the recurrent pains began. I had those strange muscle pains now and then for years before but after the stroke they began to occur more often and more painful. I started treatments for RA, Vasculitis and Sarcaidosis. Used MTX, Prednison and so on. I survived on Prednison and Naproxen for over 2 years. But even after those years it had to take till 2017 before something major happened.
Do you already have a diagnosis? How long did it take you to get it?
I was not diagnosed with WD before july 2017. Got in the hospital with severe heart problems. Had an emergency surgery where they replaced my aortic valve. The tissue what is taken away was also tested for WD. After three weeks it turned out to be WD.
I had ceftraxion for a couple of weeks. A installed picc line was used for that. After 4 weeks I could go home. There I took cotrimaxozol for over a year, almost.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I was not used to listen to my body. I kept going on. Trying to survive mostly.
I trusted the docters so far. Can understand that they missed WD during the diagnosis periode.
What has been the most useful thing for you so far?
The slow groing sense that I can listen to me body and that it is a serious advisor.
What have been your biggest difficulties?
Trying to stay positive. Keep believing in a good end (still trying to do so).
How has your social and family environment reacted? Have your social or family relationships changed?
I am divorced during this period. So me life really turned upside down.
What things have you stopped doing?
I am still trying to live me life as before (even if I know I shouldn't). But i cannot let it get yet...
What do you think about the future?
I live by the day (Carpe Diem).
So far, which years have been the best years in your life? What have you done during them?
PM
What would you like to do if you didn’t have your condition?
PM
If you had to describe your life in a sentence, what would it be?
Do your best!
Finally, what advice would you give to a person in a similar situation?
Listen to your body and trust the signals. Never give up. You do not need to be a doctor to take the body signals seriously
