- Mixed Connective Tissue Disease (MCTD)
- Interviews
Pat's interview
How did all start?
I started showing signs of Raynauds but was left with the disease diagnosis. Within 4 months I started showing joint pain. I had random episodes of allergic reactions to unknown sources.
Do you already have a diagnosis? How long did it take you to get it?
It took 1 year to have a diagnosis however I feel this will change over time.
For what medical specialties have you been treated? What has been the most useful specialty for your?
So far I have only been treated for joint pain and inflammation. Despite muscle myopathy, the treatment did not work as I became violently ill
What has been the most useful thing for you so far?
Trying to get as much rest as possible
What have been your biggest difficulties?
Family not understanding and trying to find the right treatment for muscle cramps
How has your social and family environment reacted? Have your social or family relationships changed?
My family doesn't always seem to understand when I need to rest. They expect me to still have the energy I used to.
What things have you stopped doing?
Exercise. I get winded walking up stairs
What do you think about the future?
I try not to think about the future at the moment. Taking one day at a time
So far, which years have been the best years in your life? What have you done during them?
20-35 seemed very good for me. I was fit and felt great. I was able to hike, walk, excercise, run after kids etc
What would you like to do if you didn’t have your condition?
I would like to be able to go for walks again and try to lose some weight
If you had to describe your life in a sentence, what would it be?
Trying to live the best I can one day at a time.
Finally, what advice would you give to a person in a similar situation?
Educate yourself and those round you.
