- Schnitzler syndrome
- Interviews
Karolena Dempsey's interview
How did all start?
Constant muscle pain and joint pain, numbness and tingling throughout my body and abnormalities in my blood work just numerous things were wrong
Do you already have a diagnosis? How long did it take you to get it?
I was diagnosed in June of 2015 but it took almost 12 years to get the diagnosis
For what medical specialties have you been treated? What has been the most useful specialty for your?
I've been treated under Rheumatology oncology I am also diagnosed with monoclonal gammopathy of undetermined significance which is confirming factor for this disease. Both my rheumatologist and oncologist have been very useful and helpful
What has been the most useful thing for you so far?
All the research and education I've given myself as well as speaking with doctors in Germany
What have been your biggest difficulties?
Trying to get answers to know what causes this to know if it's genetic as my children show blood factors the same as mine to know what the prognosis will be of this there's so little known about this disease and so few of us with it
How has your social and family environment reacted? Have your social or family relationships changed?
My immediate family such as my husband and children have been very accepting and trying to understand as much as I am. I find a lot of extended family and friends do not really understand what I'm going through or how this feels
What things have you stopped doing?
Over the last year I've had to slow down quite a bit I've never been one to sit still but I physically cannot do the walking or standing or sitting for that matter for long periods of time which means I've had to stop working as well
What do you think about the future?
I feel very unsure it's so unknown for me right now
So far, which years have been the best years in your life? What have you done during them?
When I first got diagnosed in 2015 it was probably a very happy time and once I started on my Kineret I was able to start being a patient advocate and working with people in our government to try and bring attention and light to rare diseases
What would you like to do if you didn’t have your condition?
I would love to be able to continue a career to be able to travel and do things with my kids without restriction
If you had to describe your life in a sentence, what would it be?
Scary an unknown it seems more more stuff just keeps popping up
Finally, what advice would you give to a person in a similar situation?
Research research and research Do not sit back and take the slightly continue to advocate for yourself
