14-VUOTIAS KERTOI BORRELIOOSISTA KENNEDYLLE

Borrelioosiin sairastuneiden henkilökohtaisia kokemuksia taudista ja sen hoidosta.

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14-VUOTIAS KERTOI BORRELIOOSISTA KENNEDYLLE

ViestiKirjoittaja soijuv » Ke Syys 02, 2009 16:20

Alexis Simendinger sairastui borrelioosiin 11-vuotiaana. V. 1993 hän oli 14-vuotias ja erittäin sairas. Liikkuessaan hän joutui turvautumaan pyörätuoliin. Hänelle tarjoutui tuolloin mahdollisuus kertoa borrelioosia sairastavien vaikeuksista senaattori Kennedylle. Alexis kertoi borrelioosin olevan lukuisia ihmisiä koskettava vaikea sairaus ja että tauti vaatii parempaa hoitoa kuin neljän viikon antibioottihoidon.

Kennedy kertoi tapahtumasta myöhemmin lehdistölle seuraavasti: "Mikäli joku ei liikuttunut Alexisin viestistä, hänellä ei ole sydäntä."

Alexisin äiti toimi aktiivisesti borrelioosijärjestöissä ja haki tietoa borrelioosista. 17 vuoden iässä Alexis tuli oireettomaksi. Hän lähti kokemuksiensa vuoksi lukemaan oikeustiedettä ja on nyt valmistunut asianajajaksi.


http://www.nationaljournal.com/remember ... hingto.php FRIDAY, AUGUST 28, 2009

'People Were Going To Washington'By Alexis Simendinger Evan WhiteLabor lawyer

Note to readers: White testified at age 14 in 1993 about his battle with Lyme disease during a hearing chaired by Kennedy. The Boston Globe and other media took note of Kennedy's emotional reaction to White's testimony. "No one could hear or feel the moment of that child and not be moved," Kennedy explained to the Globe at the time. Anyone who wasn't moved, he said, "hasn't got a heart." I recall being laid up in bed and my mother telling me that people were going to Washington to talk about Lyme disease, which I had contracted in the fall of 1990.

I told my mother I wanted to make the trip.. I was 14 years old at the time and lived in my family home in Suffern, NY. I would have been in the ninth grade, but I hadn't been in school since I was 11 years old due to my illness. I received some limited home schooling, to the extent that I was able to tolerate it. Because of refused or neglected treatment, the disease had penetrated my blood-brain barrier and affected my cognitive ability. Fortunately, those effects were not permanent, but for close to four years, it was very difficult for me to keep up with my education. My mother was very involved with the local Lyme disease support groups.

She told me we would be speaking before Senator Kennedy in Washington. I knew who Senator Kennedy was and I knew who his brother had been. The debate at the time was whether Lyme disease existed in the body beyond the standard four-week treatment with antibiotics. I was there to demonstrate that Lyme disease is severe and affects so many people and that it deserved so much more attention than the standard four-week regimen of antibiotics. I remember taking a long and trying car ride down to Washington, D.C. We arrived at the Hill and were escorted around by one of Senator Kennedy's aides, who was speaking to my mother and taking notes. They took us to a very elegant room; I don't recall the name of it.

Senator Kennedy walked in and immediately everyone in the room locked eyes on him. He greeted everyone and eventually made his way over to me. Senator Kennedy leaned down because I was in a wheelchair and he said, "You know, Evan, this is the room [the Senate Caucus Room in the Rayburn Senate Office Building] where my brothers announced that that they were running for president." He told me that personal anecdote to make me feel more comfortable and to humanize himself. The senator took me in my wheelchair -- or my mother did and we walked with him to his office where he showed me around. The first thing I remember was a dog running around, and he introduced me to his dog, Barney, and some of his staff members. His words to me were of hope, sorrow and understanding, He really made an effort to establish a connection with me. That was very important for me because as a child with an illness, you can become very cynical and skeptical that no one's out there, and no one cares. He showed me some of his pictures, including one of his son [Ted Kennedy Jr.], who had beaten cancer [at age 12].

He offered the photo as inspiration. I very vividly remember it. I remember that picture. I remember feeling very close and comfortable. And I thought this man was really going to advocate for me, and really take to heart what I would say. I trusted him. There were no cameras. There were no other politicians. There were no other constituents there. It was jus!t us. That gesture wasn't for him; that was for me. Later that day, we found out the hearing was canceled and would be rescheduled. I was very upset about that, because it meant another trip back and I was heading home without having accomplished what I hoped to do. I didn't want to come back to Washington, D.C., but Senator Kennedy and his aides were nice enough to charter a plane for us to fly down the next week, and put us up in a hotel. He was very apologetic and sincere, and it was wonderful that he took those measures to bring us back to Washington..

He understood how difficult the whole process was for us. At the hearing, I spoke a little -- just a few sentences. I think I said, "We [Lyme disease patients] can't speak and we're in a lot of pain and we need your help. Please help us." You know, just some very simple ideas. After I'd given my testimony, he paused. He took off his glasses. He had a tear in his eye. He sort of wiped that away and composed himself. I believe he said, "We owe it to you to help you out," and he offered some very encouraging words. I knew right away that this had impacted him and he was genuine in his feelings and in his efforts to try to do something to help us. I felt his sincerity. He was a person who, every moment of every day was dedicated to helping people in need, and I can't imagine that he welled up and cried every time he was summoned for help. After that day, we received some nice follow-up from the senator, some nice letters, and then we lost touch. Our initial exchange was covered by the Boston Globe, I was also being covered in other news pieces and on television, which gave me an opportunity to be a spokesperson for my cause.

By the time I was 17, when I was fully recovered, I was a featured speaker at a Capitol Hill rally about the disease. [Former] Congressman [Benjamin] Gilman [R-N.Y.] quoted me on the House floor the next day, and I got to see Senator Kennedy again. He remembered me and my mother, and stopped for a little photo opportunity. He told me how happy he was to see how I had done and how I'd progressed. I felt things were coming full circle at that point: I was recovering and he was able to share that with me. That was a really wonderful experience. Later, I attended Lafayette College in Pennsylvania and majored in government-law. I guess it was no coincidence that with my prior experience on the Hill and with the senator, I took off in that direction. Now I practice labor and employment law in New York. I still have the photo of me and my mother with Senator Kennedy. He was such a strong and inspiring personality who had been through so much in his life -- I thought in the back of my head that this [brain cancer] was going to be just another challenge, an obstacle to overcome. But what I take away are his lessons and the messages he shared with me and so many other people.
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