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CAHANIM8R's Photo CAHANIM8R SparkPoints: (44,689)
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5/7/09 10:02 A

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For anyone having problems getting to the form letter, here are the steps to find it:
Enter your zip code
Click on the "Legislative Alerts and Updates" link
Select "It's Awareness Month"
Once, you select "It's Awareness Month", scroll down and you will see the letter/form that they have available.

You can edit this form as you see fit. They also have a letter for our kids to send to the reps also.

"And this above all, To Thyne Ownself Be True" Hamlet/Shakespeare

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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 12,019
5/4/09 11:01 A

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I don't know if any of you watch the View, but Elizebeth is taking about CD today.



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JENCORINNE's Photo JENCORINNE Posts: 1,933
5/3/09 9:17 P

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I also sent the info to my family and friends to have them contact their representative.

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JENCORINNE's Photo JENCORINNE Posts: 1,933
5/2/09 11:47 A

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Donna, it isn't you, I couldn't find a form letter to use either. This is what I sent to my representative -

May is Celiac Disease Awareness month and I would like to share a little about this disease that I have.
It is an autoimmune disease with an easy but difficult treatment - not eat gluten for the rest of my and every other sufferers life. Gluten is found in Wheat(flour), barley, rye and sometimes oats. Sounds easy but limits over 95% of processed foods, sometimes simply canned vegetables will have added gluten. I have to look at every item at the grocery store since company's change ingredients without notice and something that used to be "safe" suddenly will not be "safe"
It is estimated 1 in 133 or 3 million people in the US has the disease yet only 3% in the US are aware. About 12% in UK and Italy does the simple testing on everyone when entering kindergarden. Depends on where I look the average length of time for diagnosis is 4 -11 years. There are over 200 symptoms that include -
• Recurring abdominal bloating and pain
• Chronic diarrhea/constipation
• Vomiting
• Liver and biliary tract disorders (“Transaminitis”, fatty liver, primary sclerosing cholangitis etc.)
• Weight loss
• Pale, foul-smelling stool
• Iron-deficiency anemia that does not respond to iron therapy
• Fatigue
• Failure to thrive or short stature
• Delayed puberty
• Pain in the joints
• Tingling numbness in the legs
• Pale sores inside the mouth
• A skin rash called dermatitis herpetiformis (DH)
• Tooth discoloration or loss of enamel
• Unexplained infertility, recurrent miscarriage
• Osteopenia (mild) or osteoporosis (more serious bone density problem)
• Peripheral Neuropathy
• Psychiatric disorders such as anxiety, depression
and raises the risks of colon, and intestinal cancers.

To put in persepective to other disease that have more awareness (Many of which are mis-diagnosed Celiac Disease) -
• Epilepsy affects 2.7 million
• Cystic Fibrosis affects 30,000 people
• 17,000 people are living with hemophilia
• Parkinson’s disease affects 1,000,000 individuals
• Ulcerative colitis affects 500,000 people
• Crohn’s disease affects 500,000 Americans
• 2.1 million Americans are living with rheumatoid arthritis
• Lupus affects 1.5 million people
• Multiple sclerosis affects 400,000 people in the United States
• Type 1 Diabetes affects 3 million people; 6% (180,000) of those diagnosed also have celiac disease.
• 610,000 women in the US experience unexplained infertility; 6% (36,600) of these women might never learn that celiac disease is the cause.
• 350,000 people in the United States are living with Down Syndrome; 12% (42,000) of them also have celiac disease.

It kills me to see these other diseases with fewer affected people receive millions of government dollars in research dollars yet Celiac has nothing since it has the "cure" of not eating gluten for the rest of my life and every other person in the US with Celiac Disease or gluten intolerences.

I would like you, my representative to support H. CON. RES. 110 that is sponsored by Rep. Nita Lowey (D-NY) to spread the awareness so more people can be diagnosed and get healthy.

Facts and Figures from University of Chicago Celiac Center.


It's longer than they suggest but everyone is welcome to use it. I'm not the strongest writer, if someone would like to re-word or edit - go ahead.

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TEDDYBEARDONNA's Photo TEDDYBEARDONNA Posts: 12,019
5/2/09 9:01 A

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I guess I am having a SR. moment, I clicked on the link and there isn't a form.



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GARDENGAZER Posts: 2,909
5/2/09 8:56 A

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I just contacted my representative. Thanks!
Marcie

You can choose to be happy, so why not!!!
Do one thing each day to make someone else happy!
Calorie range: 1200-1550
Know someone who needs a lift? Send them an angel or butterfly FREE. Visit Angels for Hope.org to request one.

Marcie--upstate NY


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SWIMLOVER SparkPoints: (86,393)
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5/2/09 8:25 A

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Thank You for posting this information. I will
certainly do this.
GOD BLESS!
Louise

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CAHANIM8R's Photo CAHANIM8R SparkPoints: (44,689)
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5/2/09 6:46 A

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Hi Everyone!

I just received the following e-mail from the American Celiac Disease Alliance.

"To meet the needs of patients with celiac disease Congress needs to know how many Americans have the condition. What else? They need to know the symptoms and treatment and the concerns or problems affecting those with the condition.

In just 60 seconds, you can give this important information to your Representative.

Educate and Advocate -- Do it TODAY!"

Here is the link that you need to click on to get to the website . It is super easy and very fast to complete the form. Please let's help spread the awareness of Celiacs.

capwiz.com/celiac/issues/bills/?bill
=1
3238261


"And this above all, To Thyne Ownself Be True" Hamlet/Shakespeare

Co-Leader of Panther Pride
Leader of St. Augustine Sparkies


 current weight: 263.0 
 
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