- Minimal change disease
- Interviews
Tiglily18's interview
How did all start?
I was diagnosed with FSGS in 2003. I was very fortunate because I spontaneously remitted and lived 16 years with issue. I was never told it could return! This year I had an upper respiratory infection that spurred relapse. Surprise!
Do you already have a diagnosis? How long did it take you to get it?
Diagnosed in August 2019 after an upper respiratory infection caused a relapse. It took 2 weeks for the doctors to realize what is going on. I have been on 60 mg of prednisone for 11 wk with no change.
What have been your biggest difficulties?
Taking all the medications and seeing no progress.
How has your social and family environment reacted? Have your social or family relationships changed?
Family has been supportive and they are hopeful for remission.
What things have you stopped doing?
Working and social life has had a huge impact because of medications and schedule.
What do you think about the future?
I worry that this will be a constant issue and my life will never be normal.
So far, which years have been the best years in your life? What have you done during them?
The 16 years prior to this! I was able to travel, spend time with my children and family. Work. Without having to worry about medicine, diet, etc....
What would you like to do if you didn’t have your condition?
Everything I did before! Work, play, travel, eat ...
If you had to describe your life in a sentence, what would it be?
Right now... defeated
Before... happy and fulfilled
Finally, what advice would you give to a person in a similar situation?
Try to stay positive. Remission is possible, I guess it just takes time.
