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Which advice would you give to someone who has just been diagnosed with Antiphospholipid / Hughes Syndrome?
See some advice from people with experience in Antiphospholipid / Hughes Syndrome to people who have just been diagnosed with Antiphospholipid / Hughes Syndrome
Make sure you read plenty about the condition as it is likely your gp will have little and or no knowledge. You may need to fight for the treatment / services you need.
Posted May 16, 2017 by Kate 1000
Keep taking the meds and ensure you have your bloods done. Don't let it get you down! You have APS it doesn't have you!
Posted May 17, 2017 by Ruth 1321
Join support groups. Read all you can. Be proactive in your treatment. Understand that most doctors really just don't know, so educate them.
Posted May 18, 2017 by Tauren 2100
Learn as much as you can about APS, find a doctor that either wants to learn about it or knows something about it, I was lucky enough to find a Dr. That had treated 2 other patients with this disorder and thus knew what it was and was willing to find out more.he has been my physician for12 years and is still learning about it and now is the only Dr. In the area with knowledge about it
Posted Sep 8, 2017 by Kevin 302
Seek medical advice from professionals
Posted Oct 30, 2017 by Denise Hampson 2000
First of all- don't panic. This is treatablel. Keep your docto's appointments. Assemble a team of physicians as your personal care team, i.e. Primary care, hematologist, rheumatologist & a neurologist.
Posted Feb 3, 2018 by Lhrlovesmar 3550
Go gluten free immediately if you haven’t already, and start a food and symptom journal.
Posted May 1, 2019 by JL 1700
