Scleroderma Research Bill

[luvmywonderfulkids]

Here is the link to the new bill — not sure if this is already posted on here or not.

http://www.scleroderma.org/advocacy/action-alert06012009.shtm

The text is below:

Legislative Action Alert
(Updated June 25, 2009)

[align=center]*ACTION ALERT* *ACTION ALERT *

HELP PASS THE ?SCLERODERMA RESEARCH AND AWARENESS ACT?
On May 14th, Rep. Lois Capps (D-CA) and Rep. Vern Ehlers (R-MI) introduced a landmark bill aimed at expanding federal research and awareness programs on scleroderma.  H.R. 2408, the ?Scleroderma Research and Awareness Act? is the first bill ever introduced inthe United States Congress focused exclusively on scleroderma.  You can help get this important legislation passed by contacting your representative and asking him/her to co-sponsor the bill.   Please find a sample letter below for your use.  If you do not know who your representative is please visit the advocacy page of the Scleroderma Foundation website ? http://www.scleroderma.org/advocacy/advohome.shtm.   Advocates are encouraged to e-mail or fax their letters to legislators in their Washington, D.C. office ? PLEASE DO NOT SEND THEM VIA REGULAR MAIL.  [/align]
Finally, please inform Roger Brechner — Scleroderma Foundation Chapter and Support Group Manager, rbrechner@scleroderma.org, 800-722-HOPE (4673) ext. 19 ? who you have sent letters to and the responses you have received.

Thank you very much for your interest and for your advocacy!  Together we will make a difference!

[align=center]DRAFT LETTER TO CONGRESS REGARDING THE ?SCLERODERMA RESEARCH AND AWARENESS ACT?[/align]
 

Dear Representative ______________:

Thank you for your leadership in the House on health care issues. As a constituent, I am writing to encourage you to co-sponsor H.R. 2408, the “Scleroderma Research and Awareness Act.” This bipartisan bill sponsored by Rep. Lois Capps (D-CA) and Rep. Vern Ehlers (R-MI) was introduced in the House on May 14th.
Scleroderma is a chronic and disabling connective tissue disease resulting from an overproduction of collagen.  The word ?scleroderma? means hardening of the skin which is one of the most visible manifestations of the disorder. Scleroderma can affect many areas of the body including the heart, lungs, kidneys and gastrointestinal system.  There is no known cause and no cure.  African Americans are at higher risk of developing systemic scleroderma, and women account for 80% of all diagnoses.   The estimated total economic impact of scleroderma in the United States is $1.5 billion annually.  The direct cost of treatment for patients is more than $460 million annually.  Despite these burdensome figures, the federal investment in scleroderma research is only $20 million a year. 
[HERE, IN YOUR OWN WORDS, BRIEFLY DESCRIBE YOUR PERSONAL EXPERIENCE WITH SCLERODERMA]

H.R. 2408 would do the following:

• Direct the National Institute of Arthritis and Musculoskeletal and Skin Diseases at the National Institutes of Health to expand research related to scleroderma. The legislation authorizes $25 million in FY10, $30 million in FY11, and $35 million in FY12 for this purpose. Priority areas include: [/*:dmcomzdy]

  • Development and evaluation of new treatments. [/*:dmcomzdy]
  • Research on the relationship between scleroderma and secondary conditions including: pulmonary hypertension, gastroparesis, Raynaud?s phenomenon, and Sj

[Maz]

Sue, very interesting and thanks for posting this. It's good to see some action being taken to increase awareness about scleroderma, as well as to hopefully assign more funds to research in this area.

How is your young man doing? Has Dr R started him on AP yet? Haven't seen you here for a while and thought of you guys a few times, wondering how all was going.

Peace, Maz

[luvmywonderfulkids]

Hi Maz,

Ryan is doing well I think — it is really hard to tell if he is getting better but at least he is not getting any worse. He started AP a little over 4 weeks ago, but Dr. R. has him on tetracycline 2x/week, 3x/day 500 mg. Not sure if I am happy with that but we are doing what he says for now. We have brought all the materials to Ryan's pediatric Dr. who seemed quite interested the last time we were there so we shall see — maybe we can use him.

My husband has posted a few times under my name about humaworm etc.

We did have Ryan tested through Igenix for Lyme but we don't have the results back yet.

Ryan is also having physical therapy 2x per week for 1.5 hours — .75 for his lower body and .75 on his hands.

I know this may be wishful thinking, but I do think that his worse patch seems to be getting softer.

Ryan is extremely tall with very long arms so we also took him to a cardiologist just to rule out any problems with his heart as two Dr's have mentioned Marfan syndrome to us and because that is also a connective tissue disease, that really put a scare into us. The heart tests were all perfect!

I have been reading all the posts and keeping up with every one. This board is such great therapy for me!

Sue

[Maz]

Sue, great to hear your news and that Ryan has now started his road back! Every doc is going to have their own unique MO, so it's good you're so proactive and staying on top of things…with our children we do naturally, of course!!! 😉

Certainly sounds like you're covering all the bases and will be interesting to see how Ryan's IGeneX labs turn out. Thank goodness his heart is in good shape! That must have been quite a relief to you.

Please stay in touch and let us know how things are going when you can. Hope you're hanging in there, too, Mom!

Peace, Maz

[Kim]

Sue,

Thanks for posting the link about the Scleroderma bill.  I was not aware of it and will respond accordingly.

Good news that Ryan is holding steady.  Stopping the progression is a huge first step, so fine job Mom.  Please let us know what the Igenex test shows, specifically any bands.  A “negative” is not necessarily a negative in the world of Lyme insanity. :headbang:

Take care…..kim

[luvmywonderfulkids]

Hi Kim,

So if the Dr. says that the tests were negative, I should still ask what the bands looked like?

Ryan is currently taking a sauna every night — he does this while he plays his video games, I wish I could get him to put his hands inside because they are still curled, but I am taking what I can get because he has been going through so much! He also is currently taking the humaworm but he says that he is not seeing anything strange — unlike his Dad!

Sue

[Kim]

[user=1274]luvmywonderfulkids[/user] wrote:

Hi Kim,

So if the Dr. says that the tests were negative, I should still ask what the bands looked like?

Ryan is currently taking a sauna every night — he does this while he plays his video games, I wish I could get him to put his hands inside because they are still curled, but I am taking what I can get because he has been going through so much! He also is currently taking the humaworm but he says that he is not seeing anything strange — unlike his Dad!

Hey Sue,

Just be sure to get copies of the Igenex test and we can help you interpret them.  Most LLMDs will treat if you only have one Lyme-specific band (some are more specific than others), yet the CDC positive and even the Igenex positive have a convoluted way of determining their positive value which lets most people fall through the cracks who actually have the infection.  You can also go to lymenet.com and read Dr. C's explanation of the Western Blot – he discusses the relevance of each band.

That's great that Ryan is using the sauna.  Don't worry about the hands, as long as he comes out sweaty he's increased his circulation and that's what you want.

I just don't know what to tell you about the Humaworm.  Maybe Dad is looking harder than Ryan, or it's just not a problem for him.  All I can say is it's been quite an experience for me.  Tomorrow night is the Animal Planet series on parasites – Monsters Inside Me.  Ryan might like to watch it while in the sauna. :doh:

Tell Ryan he's a trooper and we'll get out of his business real soon. :roll-laugh:

Take care…..kim

[luvmywonderfulkids]

Oh, that will be really good on Animal Planet. We will be sure to watch! We are hoping to get the results in hand by the end of the week! Thank you so much. Sue

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