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APS advice needed

(4 Posts)
APSadviceneeded Sat 07-Jun-14 08:52:55

Name changed for this. Just need a bit of help please from fellow APS sufferers. Bit of background - I was diagnosed about 12 years ago following a couple of miscarriages. Have been on blood thinners ever since & subsequently have been diagnosed with sjogrens & RA.

My dd15 has had terrible acne & as antibiotics hadn't worked GP thought possibly the pill but wanted to run tests first to make sure dd didn't have APS as my sister also has it.

Tests were positive. I have conflicting emotions obviously that I've passed on a potential life threatening condition to my dd. but also dh & I have to tell her. Just wanted to know if anyone else has had to do the same. Tests will be repeated in 12 weeks but obviously need to tell her before as she keeps asking if her test results have come back as the acne is really getting her down.

Anyone have any advice please?

3littlefrogs Sat 07-Jun-14 09:01:04

I think a good first step would be to ask the GP if they can put you in touch with any sort of counselling service to get advice regarding telling and supporting your dd.

Treatment and management have improved a lot in recent years. Have you been referred to a specialist rheumatologist/haematologist?

Do you know about the Anticoagulation Europe website (just google). there is a lot of support for people of all ages on there, also there is a Sjogrens support group .

Thank goodness you have a good GP who has taken this seriously and done the necessary tests.

I feel sure there must be some support services for young people diagnosed with chronic conditions.

I am sure someone else will be along soon.

APSadviceneeded Sat 07-Jun-14 09:18:12

Thank you. Yes I'm under the team at st Thomas' hospital for APS & also at guys for the RA & sjogrens. The problem is as my GP said is that as dd is still 15 she has to be referred to a paediatrician but by the time she will be seen she'll be 16 & eligible for st Thomas. She is going to ring them when the tests are repeated to find out the procedure but she says she cannot refer yet. In the meantime she suggested I make an appointment with graham Hughes who I see privately. I've done that for next January as he can't see her till she's 16 either!

Counselling service is a good idea & I'll speak to gp about that. GP is brilliant & I really couldn't have got through some of the things I have without her support to be honest.

3littlefrogs Sat 07-Jun-14 09:24:07

Graham Hughes is brilliant.
As is Beverly Hunt at St Thomas'.
You have the best people looking after you, and they will give you the best advice for your DD.

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