Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Family member with AS

Hello all,
I recently found out that a great-aunt of mine has been diagnosed with AS. It is a sad story and it makes me fell very lucky to have been diagnosed at an early age. She is now in her late seventies and only recently found out she has had AS for much of her life. When she first experienced back problems the doctor told her to stay stationary so not to agitate. As many of us know if you don't move it you will lose it. There have been many times when she simply couldn't make it to family gatherings. Now at her age she is simply too old to handle newer drugs for pain relief. Through all of her problems she has stayed a cheerful person. I surly am glad to have been diagnosed so early. Although we are related, we are not related by blood so there is not genetic connection for AS. I wish that she had the benefits I have so she could have received some pain relief.

Darren

Darren,

I too have a older family member with AS, blood relative tho. This was my mothers cousin who was a lot older than she was. When I was a teenager he was old. At least I thought so
I'm pretty sure this was in the 50's and early 60's and he wouldn't have had a diagnosis. At least I know he had very little information on prevention.
He was always totally bent at the waist, making him about 3 1/2 feet tall. He never complained when I was around, which was not much, but I always thought it must have hurt a lot to never stand up. He sold cars till a very old age, he seemed to love it and it kept him going.
I used to pray to God I never get that, whatever it was
Well, here I am and the only one in the family that I know of so what a jump in the gene pool. I will have to call these relatives I never see and for my own curiosity see if any of his descendants have this too.
The "why me" question has popped in my head a lot!!!

To think of what your great aunt has suffered with very little help is amazing. How bad is she? Have you talked to her about her life? I wish I could talk to my second cousin about what his life was like.........

Good luck to you both,

linda

Wow, Darren. That's quite a story. I agree that it would be very interesting to sit down with her and talk about her life. How did she deal with the pain all these years? Man, oh man.

I don't know of anyone else in my family who has AS. There might be a cousin (my mom's cousin's son - what is that, a 2nd cousin?), but he refuses to go to a doctor about the pain in his spine. Unfortunately, I don't know anyone in my dad's family all that well, and I'm not sure about how to check on them. In the meantime, I'm an anomaly - as you are, I suppose, considering your aunt is by marriage and not blood.

Gotta go type for my boss.

Hugs,

Kat

Wow Darren,.... What are the chances of finding a non-blood relative with AS???

Sorry to hear she has had to deal with it her whole life,... when info was sooo scarce and diagnosis/ treatment were sadly just a dream for most women. It's a wonder she found a way to remain positive, without the supports we have today. Even at this late stage,... I bet she will find comfort in a relative who can truely understand.

Tell her some 'fellow Spondylitics' say "Hello" and that some of us would be interested in hearing more of her story,... how she coped physically/spiritually in the absence of help.

Take care,

mig

Hi Darren,

I was thinking the same as Mig, what are the chances..... maybe you two should play the lottery

Nice doctor she had...... not.

What a great lady to keep such a cheerful attitude!!!

Take care,

Tim

"I had no shoes and complained, until I met a man who had no feet" - Indian Proverb

It is unfortunate that I have been unable to talk to her enough face to face because she is really immobile. I only found out recently and haven’t asked her enough about her history. I will be able to visit her this summer, as I will be working close to where she lives. There is really no history of back problems or arthritis in my family.

Darren

I haven't been able to talk to her as much as I would like. This summer I will be able visit her.

Darren

I know it is amazing what her doctor told her to do. I have a very supportive great-uncle who I think has helped her immensely. I want to talk to her more this summer when I am close to her.

Darren

Maybe we should and donate for AS research.

Darren

The "stay stationary and rest and no activity" was the same advice I received from my Doctor at the age of 15 but they also had no idea of what was wrong.

It is amazing that after all this time has passed, did your great Aunt have any contact with Doctors at all and if so, why didn't one of them recognize that this poor lady was suffering? It is obvious that she never was a complainer and that is too bad. She must have lived with a great deal of pain and that is so sad.

I hope that her last days are more fullfilling than her first 70 plus years. I believe that someone below mentioned something about getting a message to her from the KickAS site. Is there any way you could copy some of the posts and send them to her. It would at least let her know that we are in awe of her bravery.

George

Breb Assyl