Pectus excavatum & hypertrichosis

[SCMW]

So, this really is a long shot... just got hold of my paediatric notes. As a child, I was diagnosed with both of the above, later in life with fibromyalgia and then Behcets.

I was under the hospital as I did not thrive - was underweight, wasn’t growing and I’ve looked at a couple of links to other cutaneous type diseases which seems an odd coincidence.

Anyone recognise the above as features related to Behcets or similar conditions?

Thanks

[Milliebell1]

Hi, I too had pectus excavatum as a child which has balanced out as I've grown up and i also have scoliosis since childhood. What links did you find?

[SCMW in reply to Milliebell1]

Hi, thanks for your reply, interesting to note the scoliosis too - if you google the two together there are a variety of congenital disorders but they are usually very marked and obvious. I’ve also picked up that we have a mild clotting disorder in the family along with a propensity to cutaneous disease. I haven’t quite worked out the links yet but am sure it does link somehow. Also check mala cards which shows connections to other diseases. Am still researching... cheers.

[Milliebell1 in reply to SCMW]

How very interesting. I also had the blood disorder ITP as a child until the age of 12.. as you mention clotting.. I really believe a lot more is linked than Drs currently realise. Would love to hear more of your findings when you have them!

[SCMW in reply to Milliebell1]

That’s is fascinating - I’m off to Guys with my mother in February, to see if we can get further with an undifferentiated connective tissue disease diagnosis. Family history of Raynauds, schleroderma, etc. It’s based in genetics and they know about Behcets. Will try to remember to post again 😀 thanks

[cpops in reply to SCMW]

Hi,

I too had that diagnosis and almost 20yrs later there has been no progress.

[SCMW in reply to Milliebell1]

Hi, well I just saw my post to you in my account & we’ve got a bit further. We’ve been to Thomas’s and Guys. Seems family lean towards types of vasculitis. My mother has had IGA vasculitis, I have Behcets. She has also been tested for APS or Hughes syndrome but this takes two results 12 weeks apart - then CV19 came so the 2nd test is pending. Have a look & see if it rings any bells. Also found a link between hypertrichosis and vascular malformation:

dermnetnz.org/topics/hypert...

Best wishes