- Antiphospholipid / Hughes Syndrome
- Interviews
T's interview
How did all start?
Large blood clot in lungs- pulmonary embolism, one in 2010. Then a large saddle PE again in 2017 and a small DVT.
Do you already have a diagnosis? How long did it take you to get it?
The PE in 2010, once home the doctors never mentioned being tested. But after having a unprovoked PE in 2017 my new doctors tested me. Took 1 month to get diagnosis.
For what medical specialties have you been treated? What has been the most useful specialty for your?
Hematologist, vascular surgeon, pulmonologist. Hematologist and my regular doctor have been the best.
What has been the most useful thing for you so far?
New medication and rest
What have been your biggest difficulties?
Sitting around doing nothing due to needing to let my body heal and waiting for answers.
How has your social and family environment reacted? Have your social or family relationships changed?
I have been very supported with family, friends and my work family.
What things have you stopped doing?
Worrying so much.
What do you think about the future?
That I won't be held back and I won't be defined by my condition.
What would you like to do if you didn’t have your condition?
Skydive and scuba dive
Finally, what advice would you give to a person in a similar situation?
Get a doctor who will listen to you, who cares. And get tested for disorders!
