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
Liver and biliary tract disorders (Transaminitis, fatty liver, primary sclerosing cholangitis etc.)
Pale, foul-smelling stool
Iron-deficiency anemia that does not respond to iron therapy
Failure to thrive or short stature
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)
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
Parkinsons disease affects 1,000,000 individuals
Ulcerative colitis affects 500,000 people
Crohns 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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