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#102548 - 06/08/07 09:53 AM Welcome - Check Here For Support Group Info Links!
Melissa Velez Offline
SAA Programs Director
Registered Visitor

Registered: 07/24/06
Posts: 27
Loc: Sherman Oaks, CA
Welcome! This forum is dedicated to Spondylitis Educational Support Groups.

Spondylitis Educational Support Groups provide an avenue to exchange information and share experiences about living with spondylitis.

You can find a current list of educational support groups, leaders and contact information here .

For a list of educational support group meeting dates, click here .

If you are interested in becoming a spondylitis educational support group leader, you can find more information here .

Educational Support Group Leaders: Please feel free to start a thread specifically for your group. We will "sticky" the thread so that it remains near the top of the forum.

If you have a question about the support groups or would like more information about a support group near you, please contact Elin at elin.aslanyan@spondylitis.org.

Regards,

Melissa


Edited by JamesChoi (03/16/12 08:19 AM)
_________________________
Melissa Velez Coelho
Director of Program Services, SAA
melissa.velez@spondylitis.org

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#102549 - 08/16/07 06:52 PM Re: Welcome to the Support Groups Information Forum!
cma 1970 Offline
Registered Visitor

Registered: 08/16/07
Posts: 176
Loc: no. california
I'm very new at this, just received final diagnosis this past monday. Suffered for the past 6 years with Fibro, CFS and pain. Blood work for genetic factor is negative however Ct shows acute SI inflammation with some "cyst" formation. They want me to consider Embrel or Humera, alot to absorb in three days, but finally realize it is not in my head and probably why the unresolving hip, knee and foot pain according to the doctor. Not sure what to do or where to start, so here I am.

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#102550 - 08/16/07 07:57 PM Re: Welcome to the Support Groups Information Forum!
Spenser23 Offline
Registered Visitor

Registered: 11/28/01
Posts: 5121
Loc: New York, NY, USA
Welcome CMA1970. I think you'll find a lot of people here who can relate to what you are going through. A good place to start might be on the General Topics board, where you can read a wide variety of postings and get to know some of the people. Then, feel free to dive in and ask any questions you may have; there are a lot of very knowledgeable people who frequent these boards.

Take Care,

Spenser23
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#102551 - 11/27/07 11:24 AM Re: Welcome to the Support Groups Information Forum!
Sassygirl Offline
Member

Registered: 11/27/07
Posts: 9
Loc: Wolfforth, TX
Ok This is all new to me my husband as been diagonsed with Spondylitis and Spinal Stenosis, along with his other medical problems: diabetes, fibro, cfs, depression, dics degenertative disease. Any help that I can get would be greatly appreciated. The doc has said that he is going tobecome paralyzed from the neck down but they can't give us a timeline. We have filed with SS and so far nothing.

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#116170 - 06/29/08 11:25 AM Re: Welcome to the Support Groups Information Forum! [Re: Melissa Velez]
TitaniumGirl Offline
Registered Visitor

Registered: 02/24/08
Posts: 56
Loc: Southern California
Hi,

I reside in Souther California between LA and San Diego. Our AS group has dwindled and there are never any meetings anymore. Is there another chapter of AS in this location? Thanks in advance for any help here. cool
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Tenacious Titanium Mom

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#117471 - 07/13/08 12:42 PM Re: Welcome to the Support Groups Information Forum! [Re: TitaniumGirl]
ibqnana Offline
Registered Visitor

Registered: 07/13/08
Posts: 6
Loc: MS
Hi, this is new to me too..I just got diagnosed three months ago and with RA OA and Spondylitis. I have been dealing with this pain for years and I finally referred myself to the Rhematoligist because the pain had gotten to my hips and I could hardly walk in the evening. I am glad to know all this pain is not in my head and my family now just doesn't think I am lazy. My last visit wasn't too encouraging though..my ANA level has not changed with three drugs in three months..But I am glad to know there is somewhere others know what I am feeling!

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#119079 - 08/02/08 05:45 PM Re: Welcome to the Support Groups Information Forum! [Re: ibqnana]
memerelisa Offline
Registered Visitor

Registered: 08/02/08
Posts: 21
Loc: Eagle Lake Maine
Help, In my family we used to call this Dad's disease, he died at 63, His lungs were damaged by the disease then his brother died 5yrs later of the same thing, he too was 63, when he died. At time they only came up with a hazy dx of genetic inflammatory disease. Now I know what is was it was AS because I have it and so does my daughter. It's no longer Dad's disease it's my disease. My father and uncle worked behind an asphalt paver I believe this was an enviromental factor that caused there lungs to fail. This was 16 yrs ago. We live out in Northern Maine, many people call it the Valley, St. John Vally. I discovered AS after having severe back pain with spondylitis stage I written on my MRI. Through much proding I coached my MD to take the right test for the DX of AS and as I suspected its true. Now my Dr doesn't know what to do for me. The soonest I can see a Rhuematologist is Months away not to mention a 5-6 hour drive. My daughter is in the eary stages She is 24 so the NSAID's are helping her. Me well they have me on prednisone to manage the pain along with NSAIDS and Narcotics. ANY ONE IN MAINE WHO HAS THIS HELP. I'm 43 20 more years before 63. I have little time left.

Memere64


Edited by memerelisa (08/02/08 05:49 PM)
Edit Reason: spelling
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LisaSaucier

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#119879 - 08/12/08 03:49 PM Re: Welcome to the Support Groups Information Forum! [Re: memerelisa]
ElinAslanyan Offline
SAA Programs Manager & Moderator
Registered Visitor

Registered: 05/07/08
Posts: 84
Dear Memerelisa,

I want to refer you to a spondylitis educational support group in the Augusta Maine area. The group meets once a month and is lead by Michelle Andrews. You can contact her by emailing to:
qualey28@roadrunner.com
or call her at (207) 445-2885

The group's next meeting is actually tomorrow - Wednesday, August 13th, after that they will next meet on Wednesday, September 10th.

Here's a link to the Augusta, Maine support group page with meetings information as well as a bio of Michelle.
http://www.spondylitis.org/patient_resources/sg_augusta.aspx

I hope that you will find support and encouragement in our forums as well as through the support group. I would also encourage you to post and read in the General Discussion Forum, as it is the most visited section of our forums. I think you will find a lot of people (way past the age of 63) are finding ways to lead meaningful and full lives with spondylitis.

Warmly,
Elin


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#119880 - 08/12/08 04:08 PM Re: Welcome to the Support Groups Information Forum! [Re: TitaniumGirl]
ElinAslanyan Offline
SAA Programs Manager & Moderator
Registered Visitor

Registered: 05/07/08
Posts: 84
Hi TitaniumGirl,

I think you are referring to the Orange County support group. We are looking for a new leader/co-leaders for this group as Kyle has stepped down from her position. I know there haven't been meetings for quiet some time now. We are hoping to fill the position in the near future.

You had asked if there are any other support groups in the area - and there are two other support groups in the Southern California area: San Diego has a group - http://www.spondylitis.org/patient_resources/sg_sandiego.aspx
as does Long Beach - http://www.spondylitis.org/patient_resources/sg_longbeach.aspx

You will find meeting and leader contact information on these pages.

Best,
Elin
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#134436 - 02/06/09 04:11 PM Re: Welcome to the Support Groups Information Forum! [Re: ElinAslanyan]
Ticklepingaloo Offline
First time visitor

Registered: 02/06/09
Posts: 1
Loc: Pacific Northwest, USA
Hi I am new to this forum and AS. I was recently diagnosed and have applied for long term disability through my employers plan. After reading all the denied cases, I'm worried that the insurance company won't feel that I am sick enough to qualify. I have been on steroids for about 2 years prior to my diagnosis, and my blood tests are all in the normal range. I started on Enbrel 6 months ago and my dr is thinking about changing my meds. My blood work showed normal levels and so far there isn't any fusion in my back...just extreme pain, fatigue, muscle cramps and weakness. I know insurance companies do not like to pay so I'm a bit worried...as I can't afford to live without an income. Any advice?

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