Hi All,

Many of you probably remember a thread on the mailing list Dizzinews a couple of months back about how all of us should write our State Senators and Representatives stating the need for more research in Vestibular Disorder and treatments for them. Well, SOME of you remember that I sent a letter to each of my State Representatives, telling them about my illness, experiences, and the need for research.

I got a letter back yesterday from Rob Portman, one of the Ohio State Representatives. The gist of the letter was that he was sorry about my illness, and that he was "simply not aware of the hardships and suffering vestibular disorders can cause". He also stated that the President has called for a budget request for 1 billion dollar increase in funding for medical research. Now is the time to act people. He added that though he does not serve on the committees that are debating the research budget, he said he had "taken the liberty of sharing [my] comments with the appropriate Members and staff." Since this is coming about, and no, I had no idea about this 1 billion increase, it was news to me, ALL of us should write our congressmen....ALL of us. This would give a big boost our way here. It made me feel really good to write those letters, and to actually get back a positive response. It made me feel like I was not sitting back and complaining, that I am actually trying to do something about it.

If you need to know the names and/or addresses of the United States Senators for your state, they can be found easily at: http://www.senate.gov/senator/state.html.

I urge you all to write. In case you would like an example, I've provided below the letter that I sent.

Sincerely,

Gina Anderson

Dear Congressman Portman,

I am one of the hundreds of vestibular disorder sufferers in the Untied States writing their District Congressman for help with a serious issue. We need more medical research in this field to combat what can be a seriously debilitating illness. Vestibular Disorders are malfunctions, illnesses, or disorders of the vestibular system of the inner ear. They include such symptoms of room-spinning dizziness, hearing loss or deafness, loss of balance, pain in the neck, head, and inner ear, and nausea or vomiting that can at times be violent.

Many of us suffer from these symptoms 24 hours a day. Most of us do not lead normal lives. The medical treatments are few, getting a medical diagnosis is extremely difficult, and for many of us, there is no cure, even if a diagnosis is reached.

Let me tell you about my story. When I first became ill, I was 28, had a wonderful career in which I made a good income, and had the rest of my life ahead of me. I was totally self-sufficient and independent. I worked many hours a day, and enjoyed weekends with my husband doing activities such as shopping, going out for dinner, movies, and visiting both sides of my family who live far away from us. I am now 30. I cannot drive, work, ride in a car for long, go shopping or out to dinner, or do any of the things that I used to due to my condition. My �working diagnosis� is Meniere�s Disease, which is a disorder of the inner ear fluids. I have been to three different specialists in this field, I have had numerous tests such as a CAT Scan, an MRI, an MRA, and various blood tests, all of which were normal. They are guessing, and admit that this diagnosis is uncertain. I have been looking for an answer to the cause of my dizziness for two years. There is no cure for this disorder, and minimal treatment. My husband must now do almost everything for me. I cannot do much housework or chores. I cannot run the errands that must be done, such as grocery shopping. I even had to do my Christmas shopping this year from the Internet or television

I get severely depressed at times, because I am not the person I used to be. I feel I have failed my family and friends because I cannot do the things I would like to do for them. Due to my symptoms, I have not seen my best friend in two years, I have not visited either side of my family in their homes for two years. I cannot talk on the phone very long, since it aggravates my dizziness, so my contact with those I love is diminished. I feel I have failed as a wife to my husband. I cannot celebrate our anniversary at our favorite restaurant, go out for New Years Eve, or enjoy fireworks on July 4th because either the crowds or the noise makes my symptoms so terrible, I must go home. We have learned after two years, not to even try to do these things anymore.

There are so many more sufferers of these types of disorders who would trade places with even me. There are far worse stories I could tell you. For many of them, treatments have failed, for me, treatment has made little difference. Please, increase awareness of vestibular disorders for all of us, and demand more medical research for treatments or cures for these illnesses. With your help and many other Congressmen and Representatives, we might just get our lives back. I might get my life back.

If you would like to find out more about vestibular disorders, I have included another page to my letter with organizations that have much information to share, and would welcome your inquiries. They too, have rallied for increased awareness and research for vestibular disorders.

Thank you so much for taking the time to read my letter. I would appreciate any response you have, and please feel free to contact me regarding any questions or ideas you may have to help with this issue.

Sincerely,

Gina Anderson

• Try to keep the letter to a page or less. It takes less time for a busy congressman to read, and most of the information the congressman will need to know can be fit on one page.
• Make sure you include your return address and phone number on the letter.
• Make the letter personal. Share the effects the disease has on your life, the limits you have, and any other personal hardships you must endure. This gives the congressman a chance to understand what you are going through.
• Be sure to include a definition of Meniere's Disease, or whatever particular vestibular disorder you have. Tell the congressman what causes it, and the symptoms of the vestibular disorder, and if you can, and estimate on how many sufferers there are in your state alone. You can probably bet that the congressman has never heard of it, just like we hadn't before we got it ourselves.
• You must include in the letter exactly what you want the congressman to do in response to your letter. In this case, we are asking for medical research to help in the diagnoses, treatments and cures of these disorders. Ask for this in your letter.
• Finally, give the Senator a resource in case they need more information. VEDA is the best source. Their contact info is:
Vestibular Disorders Association
PO Box 4467
Portland, OR 97208-4467
Web Site: http://www.teleport.com/~veda/
Phone: (503) 229-7705 (answering machine)
Fax: (503) 229-8064
E-Mail: [email protected]

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