- Adiposis dolorosa
- Interviews
Dercumsireland's interview
How did all start?
Over 25 years ago and over the years the symptoms got from bad yo worse.
Do you already have a diagnosis? How long did it take you to get it?
Yes I got my diagnose last year October 2018 as I was seen by a surgeon in a Dublin hospital. She had results of an operation (remove mend of lipomas) back 2013 which helped,- along other symptoms to make a diagnose.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I was often misdiagnosed over the years by different medical professionals in Germany and Ireland. Told there is nothing wrong and that this "fatty tissue,-lipomas" don't hurt. Surgery did help for a short time with my pain till this lipomas have grown back and multiply. Dercums Disease has many other symptoms every client is different.
What has been the most useful thing for you so far?
pain managing treatments (I pref. alternative treatments)
stress management I try Hypnotherapy and massage techniques, plenty of rest, food supplements...
What have been your biggest difficulties?
being rare,- explaining myself to medical and non medical people, being misdiagnosed and dis-missed
How has your social and family environment reacted? Have your social or family relationships changed?
some are interested and understand others ignore it and don't wanna talk about it
What things have you stopped doing?
less active and outgoing as it effects my legs and movements, also feeling more tired and suffering under chronic pain ...
What do you think about the future?
hope there will be more study's done and a treatment and cure can be found
So far, which years have been the best years in your life? What have you done during them?
active wise my childhood as I had no known symptoms back than
What would you like to do if you didn’t have your condition?
maybe more traveling around Europa
If you had to describe your life in a sentence, what would it be?
Lots of up and downs but also lots to be proud off and thankful for.
Finally, what advice would you give to a person in a similar situation?
Never give up even if it takes many medical professionals and many years to get a diagnose. Don't believe if there tell you "it dose not hurt, or there is nothing wrong with you!" In the end its your body and only you self can know and feel what happen.
