- Antiphospholipid / Hughes Syndrome
- Interviews
Lizelle's interview
How did all start?
With a hangfoot, drs thought it was a nerve problem and operated. All symptoms tripled suddenly. Mem loss, balance, very out of breath etc
Do you already have a diagnosis? How long did it take you to get it?
After PE's they tested and it was +. Tests needs to be done after 12 weeks again, and it was +, again.
What have been your biggest difficulties?
Trying to make drs believe you, about symptoms. The moment you mention APS, they think everything related to you, must be APS, they don't look any further.
How has your social and family environment reacted? Have your social or family relationships changed?
Yes, everyone thinks you're looking for attention, because you don't look sick.
What things have you stopped doing?
In the beginning nothing, but I've so much pain now in my arm, that I only do what I have to do. Stopped bodybuilding, fitness and lost my job as a hairdresser.
What do you think about the future?
It's going to be long... the pain just never goes away.
So far, which years have been the best years in your life? What have you done during them?
2014. I was 40 and in the best shape of my life and very fit. I was happy and looked good, working hard and earning money. Then in 2016 everything changed and that's when I was diagnosed.
What would you like to do if you didn’t have your condition?
Just do everything I did in 2014. Live a normal, healthy life.
If you had to describe your life in a sentence, what would it be?
Full of pain and tiredness and so thankful for my son.
Finally, what advice would you give to a person in a similar situation?
Get a good dr that listens to you and explain what's going on, so that you can understand.
