Diagnosed 2 years ago after 3 miscarr... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Diagnosed 2 years ago after 3 miscarriages, pregnant again and terrified!

Avydoo profile image
11 Replies

I'm panicking at what should be a happy time as I called my doctor recently to get shots for going long haul and he didn't know what I was talking about- I used the three names for the condition yet he had to google it which is really worrying as no one has provided any treatment since diagnosis. I am on a low dose aspirin anyway and have been for past 2 years so hoping this will help but does anyone know who I should be referred to- can't bear to lose another baby due to this condition

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Avydoo profile image
Avydoo
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11 Replies
MaryF profile image
MaryFAdministrator

Hi and welcome can you tell us where you are located, which will enable myself/us to help you more effectively. MaryF

Avydoo profile image
Avydoo in reply toMaryF

Hi Mary I'm in Scotland 🙂

MaryF profile image
MaryFAdministrator in reply toAvydoo

Please read through the charity website and email it to your GP, their secretary's email address will do, marked for the GP's attention, with the word urgent in it, here is both the full charity website, plus the list of consultants we recommend: I also enclose for the GP and yourself a film, and also the recent debate in The House of Lords:

hughes-syndrome.org/self-he...

hughes-syndrome.org/

youtube.com/watch?v=V3J8BLk...

publications.parliament.uk/...

MaryF

Avydoo profile image
Avydoo in reply toMaryF

Thanks so much it's very much appreciated

MaryF profile image
MaryFAdministrator in reply toAvydoo

Use the forum as much as you wish, many people on here understand your situation. MaryF

Lure2 profile image
Lure2

Hi, As Mary says; many of our members understand your situation!

Best wishes to you for the New Year of 2016!

Kerstin in Stockholm

Meddlingwife profile image
Meddlingwife

Low dose aspirin brought me my two miracle babies! Try not to worry. So much luck wished upon you and your baby!

laineydt profile image
laineydt

Hi,

1st of all congratulations.

Where in Scotland are you? I am in Scotland and my consultant gave me a pregnancy plan after I was diagnosed last year. I was told to contact the hospital when I fell pregnant rather than go to the GP.

Do you have a hospital consultant or just a GP?

Fayeina profile image
Fayeina

Hi

Congratulations. I complete understand your fear. I'm 17 weeks after 2 mc and a miscarriage that turned into our miracle daughter (with no aspirin or medical intervention). Diagnosed in April after my second mc and am on aspirin and low dose fragmin. I'm under s multidiscipline team at the Royal and Liverpool Womens. You should definitely be referred to a specialist consultant as you will likely have more scans at the later stages to check growth of baby from 28 weeks. Good luck and keep us posted xx

Debbweb01 profile image
Debbweb01

Mary I just watched the amazing Dr. Hughes! Seems like a handsome gentleman! Do u know wen or how long ago this was made? He seems very young and still very able! Not insulting just surprised to c ho young he is!!thx Mary

Barb4beachnit profile image
Barb4beachnit

I am located in Florida and truly believe I am getting cellulitis in a lung along with legs and it is related to my Hughes Syndrome. I was wondering if you could direct me to a knowledgeable doctor who practices near me?

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