Andrea's interview
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How did all start?
My Daughter was diagnosed with Madelungs Deformity when she was 9 years old in 2012.
Do you already have a diagnosis? How long did it take you to get it?
My daughter was diagnosed after a fall, X-rays showed the Deformation in both wrists leading to a diagnosis of bilateral Madelungs Deformity. Which was again confirmed in 2015.
For what medical specialties have you been treated? What has been the most useful specialty for your?
She manages her disability with the use of heat therapy, different splints and a mixture of over the counter medication or medically prescribed medication depending on her pain levels.
What has been the most useful thing for you so far?
The most useful things we have found are making adaptations to everyday appliances.
What have been your biggest difficulties?
The biggest difficulties are getting people to understand the condition and how the pain effects "normal" day to day activities.
How has your social and family environment reacted? Have your social or family relationships changed?
After she was originally digagnosed in 2012, I found there was not a lot of information regarding Madelungs Deformity so the only Madelungs Deformity Charity was set up. www.madelungsawareness.org https://m.facebook.com/Madelungsawareness/?locale2=en_GB
What things have you stopped doing?
Madelungs Deformity stops sufferers from doing numerous things in varying degrees depending on the individual.
Finally, what advice would you give to a person in a similar situation?
I would advise other to seek medical opinions and a second opinion if needed and where possible. I would not recommend rushing into surgery with out taking the time to research yourself and asking other sufferers their own personal opinions.
