- Antiphospholipid / Hughes Syndrome
- Interviews
Stephanie's interview
How did all start?
Two miscarriages in a row after my first healthy child, then a third miscarriage after my second child.
Do you already have a diagnosis? How long did it take you to get it?
I do. It took 4 years from my first miscarriage to a diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
I don't understand this question.
What has been the most useful thing for you so far?
Change in diet to reduce processed carbs/sugars and a daily yoga regimen.
What have been your biggest difficulties?
The emotional ramifications of multiple miscarriages. Homeschooling my children through chronic pain and fatigue. Living with an 'invisible' illness that prevents me from doing everything the people around me can do.
How has your social and family environment reacted? Have your social or family relationships changed?
I try not to mention my disorder if I can help it. I have family members with other autoimmune diseases who don't like having their struggles overshadowed and who act like illness is a competition so I keep my pain and other symptoms to myself as much as possible. I have much fewer friendships since my diagnosis just because I am home so much.
What things have you stopped doing?
Intense exercise, caffeine, sugar, more than 2 or 3 outings in a week, many stressful situations.
What do you think about the future?
I just know things are only going to get worse as my body breaks down and the day to day pain level increases until I can no longer manage it.
So far, which years have been the best years in your life? What have you done during them?
College. I traveled a little and had very few symptoms of APS at that point.
What would you like to do if you didn’t have your condition?
Travel more. Do more activities and outings with and for my kids. Leave the house more and spend more time outdoors.
If you had to describe your life in a sentence, what would it be?
I never have the energy or motivation to keep up with everything that needs to be done and I always feel guilty about it.
Finally, what advice would you give to a person in a similar situation?
This is so hard and that isn't your fault. Just do your best and don't let anyone else make you feel bad about how much you can do.
