Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Power to the People!

I have an open mind about the idea. Like Strutsy, I would like you to give some background.

However, I think that the "experts" could learn from what their patients are saying. I think that they could learn more through evaluating the range of symptoms, especially the symptoms of women who may have AS.

I am not sure about the pharmaceutical companies and their participation. However, since I cannot afford my own medication, I am also open to the idea of participating in trials if the medication will help me to be pain free. I am doing extremely well with Lyrica, but I cannot afford to buy the prescription. If trials of a new drug for neuropathic pain were happening here in Australia, I want to hear about them, talk to my doctor and possibly seek to participate. I am not eligible for the anti-TNF treatments.

Also, there would be the opportunity for the experts to get a handle on the number of people who do not have the HLAB27 gene. Those of us who are neggies have a very hard time getting a proper diagnosis and a lot of time and money is wasted because of misdiagnosis. The "experts" could learn something by listening to the patients, and like us discovering the symptoms that we have in common, especially the symptoms that have led us to recognize the possibility that AS should be considered.

The idea should be left open for discussion as far as I am concerned. As for participation with the pharma, no one is obliged to be a volunteer for these things.

Dear all

While I don't see how me introducing myself would give any ideas I put forward more or less credibility, I can appreciate why some would like a little more background given the personal nature of this site and its forums.

Over the last couple of years I have noticed changes in my body which have led me to seek the advice of various medical experts in trying to give a name to whatever it is I have. One of the first things I did when I started experiencing symptoms was to try and diagnose myself with the internet as my only tool. Most people will tell you this is a futile endeavour by any standards, however it did bring me to this site (and posting to you now). The current consensus seems to be that I have psoriatic enthesitis. I am not sure they have got it right yet, but it's a start.

I am definitely still in denial, and this is also part of the reason why I have kept my posts purposely anonymous with little reference to myself. Suffice it to say that I don't think anyone who has not had any experience with chronic pain, be it at the mild or extreme end of the scale, would be in a position to comment on its relativities!

Stay well

Bro

My thoughts exactly Jeanna. I was just not going to post but couldn't resist adding my "Amen" to your post.

Hope all is well with you and yours.

Blessings.
Possi

Bro, psoriatic enthesitis would definitely be a close relative to AS. We do have several members with psoriatic arthritis.

I understand your confusion (is that the right word) about why we might want to know more about you. What you may not realize is that KA has undergone a huge growth over the past couple of years, as well as some pretty significant change. We did not all respond well to that change, and it came from people we knew pretty well. Took some time, but we finally achieved balance again and remembered what we were all here for.

Your idea is interesting, even intriguing. Had it come from someone we knew it's entirely possible that debate would have ensued. However, you are a virtual unknown. Please try to understand that we are a very closely knit group. We have come to trust one another over time and while newcomers always welcomed into the fold, new ideas aren't always accepted as easily.

Also, this is the internet. We really know nothing about newcomers and there are those here who do not trust pharma companies (for good reason), so some scepticism will please be understood. We want to know about you, more about you. You have some interesting ideas, but since you've chosen not to share any information about yourself, we don't know the motivation underlying them. It takes time to establish the level of trust some of us have for the others here.

Don't know if that helps.

Hugs,

See this?

"Diagnosis

There is no direct test to diagnose AS. A clinical examination and X-ray studies of the spine, which show characteristic spinal changes and sacroiliitis, are the major diagnostic tools. A drawback of X-ray diagnosis is that signs and symptoms of AS have usually been established as long as 8-10 years prior to X-ray evident changes occurring on a plain film X-ray, which means a delay of as long as 10 years before adequate therapies can be introduced. An option for more accurate (and much earlier) diagnosis are tomography and magnetic resonance imaging of the sacroiliac joints."

its from the wikipedia.org entry for AS.

signs and symptoms of AS have usually been established as long as 8-10 years prior to X-ray evident changes occurring on a plain film X-ray,

signs and symptoms of AS have usually been established as long as 8-10 years prior to X-ray evident changes occurring on a plain film X-ray,

signs and symptoms of AS have usually been established as long as 8-10 years prior to X-ray evident changes occurring on a plain film X-ray,


MANY of us spent 10 years of PAIN and mANY doctors, before they found a doctor to believe them. I think that if you unleashed US upon the doctors, there wouldn't be a doctor left standing in the room.


Marnie

please don't take the above post as anything but anger towards the many dcotors that treated me like crap and told me i was crazy. Then i found my current rheumy. And got better, and got a job and because a PERSON again. I didn't leave the house for probably a year. I know I'm not alone in experiences like those and it makes me very scared to talk about how I am REALLY feeling to anyone outside of my loved ones, and this message board.

Marnie

Bro,

Hi, there and welcome to KickAs....guns blazing and all! Your excitement was refreshing to me.

As you can see, we are a pretty neighborly group and when someone rides into to the cul-de-sac in an unfamiliar car with a bullhorn and balloons, it makes us a tad nervous and somewhat skeptical. Especially because KA Street is right in the middle of the Information Super Highway.

Now, with that said, I want to say that I DO see your points. They are valid visions. What you may not know is that KA has a definite plan for site growth, derived from our users' suggestions and executed by the expertise of the Administrative team, comprised of business, technical, and marketing professionals-working or retired- ALL AS SUFFERERS that volunteer their personal time to KA. It is also a USER FUNDED site. This means that Kickers themselves (even those with costly meds and limited incomes from the inability to work) provide the web hosting costs, the cost of the software, etc. needed to maintain this website.

On the networking issue, the Admin team regularly seeks to put a link to our site on related sites. One such site is the National Organization for Rare Diseases (NORD). If you search Google for Ankylosing Spondylitis Support, you will see KA in the #1 position. If you follow a few of those links, you will see that there are links to KA on a number of them.

About the research and pharmaceuticals, we would only allow this kind of thing if by doing so would directly further SUPPORT for AS sufferers. And only by invitation and only with a clear vote of the KA community. It would have to be a group decision.

The bottom line is that KA was created for and will always be a support site for AS Sufferers. Could we take KA's structure and model other like communities? Sure. Could having more involvement with the medical and pharmaceutical have benefits to our neighborhood? Sure. Could these involvement be detrimental to our neighborhood? YES, if we lost the ONE THING THAT MAKES US UNIQUE--OUR SUPPORT SYSTEM. KickAS, as a community, and those that manage the site, WILL NEVER compromise this.

Your ideas are great, Bro, no doubt. Please know that your ideas have not gone unheard! Ankylosing Spondylitis awareness is very important and we should all particpate in whatever activities we can to "spread the word" and advance research. Support for the AS sufferer is extremely important as there are few avenues available to us. There are plenty of sites with medical info and plenty of pharmaceutical sites for the meds that some of us use.

So, be patient with KA and stick around and help us maintain our status as the #1 Ankylosing Spondylitis Support Site on the web. We have to help support each other!!

Take care!
Holly

Holly,

You did a wonderful job of addressing this thread as usual.
I want you to know how much I appreciate the administrative team for all you do.

Hope things are going well with you.

Blessings.
Possi

Wind,

I hope that you actually read the Act HR 4013. If not, here is a copy: HR 4013. I can't for the life of me understand how you think NORD is lobbying FOR the pharmaceutical companies.

Quote:

---

During the 1970s, an organization called the National
Organization for Rare Disorders (NORD) was founded to provide
services and to lobby on behalf of patients with rare
diseases and disorders. NORD was instrumental in pressing
Congress for legislation to encourage the development of orphan
drugs.

(4) The Orphan Drug Act created financial incentives for
the research and production of such orphan drugs. New Federal
programs at the National Institutes of Health and the Food
and Drug Administration encouraged clinical research and
commercial product development for products that target rare
diseases. An Orphan Products Board was established to promote
the development of drugs and devices for rare diseases
or disorders.

---

.

I think that to say that by our having a link AS A SUPPORT GROUP on a nationally recognized site for rare diseases lends KA and its users to being guinea pigs for medical and pharmaceutical research is more than a bit of a stretch.

I am sure at some level, there may be mismanagement of funds, as in any governemtal body, but I think it is really unfair to NORD to say that they are merely lobbyists for the pharmaceutical community.

Kickers are in charge of what happens on this site. No one will ever be forced to answer a poll or participate in research. If a Kicker does not wish to participate, then choose another of the thousands of topics on our forum to read or in which to participate.

I just wanted to share my opinion of NORD, as you have shared yours.

Take care!!
Holly

Holly, I love your reply. It was perfect. Thank you very much for your wisdom and your ability to communicate exactly what needs to be heard. You addressed Bro's enthusiasm, and I agree, his enthusiasm is awesome and needed. I hope Bro reads your post and is encouraged to continue to stick with us at KA!

I also appreciated the information regarding how KA is set up, and what are parameters are.

Again, thank you,
Rita