- Mixed Connective Tissue Disease (MCTD)
- Interviews
Kelly's interview
How did all start?
My family doctor sent me to a rheumatologist to manage my Ehlers-Danlos. He felt that another condition was hiding behind my EDS symptoms and did labs. I was diagnosed with MCTD which explained my extremely swollen and painful hands and other symptoms.
Do you already have a diagnosis? How long did it take you to get it?
Yes. I was diagnosed on my second visit with the rheumatologist after my labs were complete.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I have a rheumatologist, pulmonologist, cardiologist, neuro-surgeon, pain management, and endocrinologist. The most helpful has been rheumatology because he actually wanted to dig down and find out everything that's wrong so I can be treated for as much as possible,
What has been the most useful thing for you so far?
Pain management
What have been your biggest difficulties?
Getting my pain under control and getting my insurance to cooperate with medications I need.
How has your social and family environment reacted? Have your social or family relationships changed?
Yes, my husband of 27 years nearly divorced me. He says my health had nothing to do with his decision, but how can it not affect our marriage.
What things have you stopped doing?
Weightlifting, vigorous exercise, socializing, continuing education.
What do you think about the future?
I feel the future is rather bleak. I have three young children at home. I worry about them having Ehlers-danlos from my genes. I worry that my organs are hardening and I may not live to see them grown.
So far, which years have been the best years in your life? What have you done during them?
My 30's were pretty good. Some of my EDS symptoms had leveled out and I was able to be really fit, I was able to get pregnant, I was working in a career I loved.
What would you like to do if you didn’t have your condition?
I would continue as a counselor, go back to school, back to work, exercise, lift weights, see my kids grow into amazing adults, weddings, births, etc.
If you had to describe your life in a sentence, what would it be?
I am incredibly blessed to be entrusted with so many health challenges.
Finally, what advice would you give to a person in a similar situation?
Keep the faith, stay strong, keep moving, keep pushing. You won't feel better lying around, so do what you can each day to find joy, enjoyment, peace, love, and fun.
