TO ALL: Response from Kathryn. ACTION REQUIRED!!

Dear Colin,

I've updated the following message and included info on possible blog entries at the end. Please read and act now. It is important to me but very important to many more than me.

I really need a few minutes of your help as well as continuing prayers. I just got out of the hospital again. As you may know, I have been diagnosed with a fatal, untreatable illness called lymphangioleiomyomatosis LAM. If it is what I die of, it will suffocate me to death. I've never smoked. It's not contagious, and not a "lifestyle" illness.  They do not know the cause but suspect probably a spontaneous, somatic mutation. But LAM was being researched by the US government (at the NIH) for the last ten years. That funding has been cut. But if you and others you know act immediately you could change that. The program is being immediately phased out and while I was listed to be placed on the "subject study" all studies are ending. My girls and my two little granddaughters may also have LAM. They have not yet developed a diagnostic test until symptoms develop. Like breast cancer LAM is estrogen driven. Researchers believe that LAM may be more sex-linked than breast cancer and lupus, which means that more men get breast cancer and lupus than LAM. Women get LAM.

[Colin, please check these links to see if they work when you receive them in this document. If not, they are in the LAM foundation letter which I have attached and scanned for viruses.] Click the links below to download the list of members from the House and Senate Appropriations Committees.

House | Senate

Please take a few minutes to send an immediate email to your national Representatives and Senators on the appropriation Committees. If you could also call their Washington offices and urge the continuation of LAM funding in the appropriations bill so they can insert language before the March 16 deadline and tell them why you want the call noted and researched that would be terrific. You can find your representatives' and senators' email by going to the link www.webslingerz.com/jhoffman/congress-email.html

 

I've included three basic letters -- one if a rep is from your district, one as the rep from your state on the appropriations committee, and one if the Senator from your state is on the committee that funds all National Institute of Health (NIH) research grants. All the attached letters have been scanned for viruses. LAM research has gone on for 10 years at NIH.

The best way I can tell you about the disease and what this funding cut does is to have you read the one of the letters. All you need to do to email is add your representative or senator's name and your basic info at the end of the letter and cut and paste into email. You can also add to the letters if you wish. If you see a typo please correct it. Faxing a copy of the letters after you emailed them would get additional attention (or so they told me at the local offices!)

The doctor who originally diagnosed me only gave me until April to live. He was wrong. I am going to beat that. (With God's grace and His timing I will beat it by years and see my youngest grow up and maybe even see her married!) I'm trying to be prayerful and hopeful. But, the disease is relentless and time to continue funding is short. Please get as many people as you know in as many churches, other groups outside of church, other groups you belong to, etc. to email and call. Doing both is important. In this effort numbers do matter. Emails and calls to the Washington offices ARE COUNTED I'm told. Our prayers go directly to God. Politics doesn't work the same way. Mobilization matters. Please feel free to forward this email and the letter attachments.

There is NO stem cell research involved in the research at NIH. It's research on us, LAM women-our blood, tissues, lungs and bodies (we volunteer) for the 4-5 days of tests two times a year (I had yet to go.) They have not found a treatment let alone a cure and have given up. LAM is where breast cancer was 150 years ago and while they haven't found anything to treat us they have found several targeted breast cancer treatments while researching LAM. Both diseases are estrogen driven. I've included links to LAM sites as well for those of you interested in finding out about LAM. To learn more about LAM, visit http://www.lamtreatmentalliance.org/aboutus_Amy.asp  and http://www.thelamfoundation.org/LAM_aboutLAM.htm  Here is also a quick link to watch

http://www.youtube.com/watch?v=mtsG65zTSsg  Lung transplant is not a cure as LAM cells metastasize but it can buy time for some young people. She has courage.

Since scientists suspect LAM itself is severely under diagnosed and misdiagnosed as  asthma, bronchitis or emphysema for many years, the number of women who currently have LAM is unknown. Many physicians have never heard of the disease, and diagnosis requires a CT scan of the lungs and/or abdomen, LAM cysts cannot be seen on a lung x-ray. On average, LAM goes undiagnosed or misdiagnosed for many years and LAM is especially cruel in that women are often diagnosed during pregnancy and learn that they may not live to see their children grow up. There is currently no effective treatment and no cure.

Many LAM women have invested years at great personal sacrifice in visiting the NIH to contribute to LAM science. The continuing contributions of LAM women's living cells, health history and genetic information could also be useful in unraveling this gateway disease. We are on the verge of breakthroughs for LAM with applications for other diseases. The current LAM researchers understand that LAM, although rare, can teach us about more common serious diseases including breast cancer, prostate cancer, melanoma, atherosclerosis and diabetes. I would hate to see the work that LAM women, along with committed scientists at the NIH, have done to date go to waste. It will if the research and funding ends.

While I can't yet go out much and I'm still mostly in bed I'm eager to talk to anyone and time is very short. I am sitting up most of the day and even walking around some and as anyone who knows me knows I'm mostly able to talk unless I'm unconscious! I've just never been moved to take this kind of action but after great, prayerful deliberation decided I must. God had pretty much decided the timing for me with my illness.

Thank you so much for taking the time to read this and acting on it as well as passing it along ASAP to as many as possible. (Please take out my phone number though as I believe that would be wise.)You have my prayers of thanks for your efforts as do the many women across the world affected by the many hormone driven diseases LAM research affects. The letters are attached as is a background information letter from the LAM Foundation if you want to look at it. All you need to do is add your name, address, email and phone number to the body of the letter as well as your specific representative's or senator's name and cut and paste into email. Anyone in any state can see if they have someone on the appropriations committee in the house or senate by clicking on the link I've included in the earlier paragraphs or the LAM Foundation letter.

Your two emails (and if possible two calls to a Washington office) a piece could make a vital difference. Multiply that by all the people you get to respond and maybe some positive action will be taken. I will let you know what happens in any event. My husband and children also prayerfully thank you.

I will look forward to hearing from you but since it appears you can get things from me, will write something this weekend when I can use my wrists again and get it off to you so you may post it that way. I really do wish to be involved with the blog though I'm less technically adept than you (yes even than you!)
God has been poking at me to speak up and I've found I'm much better off when I listen to what He wants. I'm even better off if I not only listen but actually follow through on DOING what it is He told me to do. Take care.

Sincerely,

Kathy S.

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     I recieved this letter today, 3/9/07, and with Kathy's permission have posted it for you to read.  However, I must also ask of you that you take action.  LAM is a horrible condition and now faces the elimination of the appropriations so desperately needed to fund research and hopefully a cure.  Please look to your conscience.   Pray for Kathy and all who suffer the devastating, and fatal effects of this disease.  Please, hit the links above and write and call your public servants to do their jobs to save lives.  May God bless you all, Colin

This post is not decorated with Dorothy Gantenbein's beautiful photographs...there should be no distraction from what I consider to be a moral imperative.

Comments

[Justine Laymond]

Hi, I am the girl in the You Tube video..."Living with Lam".
I agree not enough funding is available to help find a cure for Lam. I sufferred 15 lung collapses and faced death a few times - one wherby I was saying goodbye to my family/fiance. Another wherby I ended up on a life support machine for weeks.
I fought so hard to battle with Lam, and realise that I am lucky to get new lungs and get an extension on life - that I may never had.
My love and thoughts go out to you and all other Lammies.
Lots of love,
Justine Laymond (UK). xxx

[TheSkinnyCook]

Hi Colin and Kathryn,

Our hugs and prayers are with you. I agree that more funding is needed for all diseases that "seems to happen for no reason".

There is no such thing as no reason.

There are politicians that get money NOT to look for reasons, so for all politicians that want to make a difference: make the difference! Every ent well spend is a cent well spend.