Osteoneocrosis link to APS

Hi everyone

I just had a bit more clarification on a problem I have had since childhood. With my recent diagnosis of Aps, i started to question some of my past medical history.

One of the main problems I have is that I was diagnosed with Legg-Calve-Perthes Disease at 7 years old and as such have had 3 major hip operations, replacements and now have osteoarthritis ect.

Perthes Disease is osteoneocrosis or avasular necrosis of the femoral head its a clinical entity in which bone death occurs as a result of interruption of blood at the level of microcirculation.

So my every inquisitive mind did some digging and this is what I found.

"Secondary causes of this avasular necrosis in children include sickle cell disease, APS, or can be caused by prolonged use of systemic corticosteroids "

All these years I haven't been able to put a reason down to my perthes disease. Now I am very sure it was caused by APS. The scary thing is that its taken a stroke in my brain to find the APS, and that I have obviously had it for a long time. I am 50 so thats at least 43 years..yikes !! 😟

It answers why I lost a lot of blood on my last hip revision replacement.

My digging has also revealed the reason for my emergency hysterectomy at 29 yrs due to severe blood clotting and hemorrhage

Amazing. I will talk to the heamotogist speacilist on the 29th of this month and see what he has to say on this.

Cheers

Karen

[Lure2]

Hi Karen,

I think there is a lot of different "things" caused by APS and more it will be when time goes by. Prof Hughes discovered this illness 30 years ago. A lot of different Specialists may be involved because any part of the body can be attacked.

Good that you have found out about it at last! We need also to do some detective job.

Best wishes from Kerstin

[MaryF Administrator]

Hi, where are you located? Please get them to do these blood tests in the hospital: hughes-syndrome.org/about-h... and please have a good look around our charity website, which has up to date and clear information, including a list of recommended specialists in the UK: hughes-syndrome.org/ A lot of us have had a long meandering or tricky journey before arriving in the right place. MaryF

[Hidden in reply to MaryF]

Hi mary

Im located in Australia. I have had a very good look around this great site. Bloods where taken in hospital.

Thank you for your concern

Karen

[MaryF Administrator in reply to Hidden]

Hi, we have quite a few members in Australia, I enclose this link with a name on it: apsaction.com/ Also quite a few people have seen Dr Tim Godfrey in Melbourne. Let us know how you get on with the tests. MaryF

[Hidden]

Thanks mary,

Im in western australia, way on the other side to melbourne.

[Jane01]

I have just been diagnosed with AVN of the Hip. It happened suddenly and I am distraught about it. Total Hip Replacement was planned for June but I happened to mention my 4 months of chest pain to the anaesthetist and he insisted I go back to the cardiologist for more tests ... which showed bilateral PEs. I had surgery in Dec, chest pain and then hip pain from February... Dxed July with PEs. I do have FVL but I have always been told I am low risk for clotting. ( I was on Clexane for a month after my Dec surgery)... My new General Physician noticed my legs at my appt.. They are red and suggest venous problems but as I explained to him - I have always had this since a teenager.. Now I wonder if I have both FVL and APS ? I am in SA, Karen.