Hilfigerin mukaan kipu oli murskaava. Hän istui usein kylpyammeessa tuntikausia tai käytti kävelykeppiä apuna. Hänellä oli myös nuhaoireita ja univaikeuksia. "En voinut sivellä jalkojani voiteilla koska tuntui kuin ne olisi hakattu pesäpallomailalla. Tunsin itseni 80-vuotiaaksi." Viimein, ollessaan 19-vuotias, Ally tapasi psykologin joka kykeni diagnosoimaan Borrelioosin. "Olin erittäin helpottunut. Tuntui kuin olisin voittanut lotossa."
Paikallisen Borrelioosijärjestön edustajan, Diane Blanchadin mukaan Hilfigerin kokemat negatiiviset testitulokset ja virhediagnoosit ovat erittäin tavallisia muillakin.
Diagnoosin jälkeen Hilfiger oli vuosien ajan toistuvilla antibioottikuureilla. "Jokaisen kuurin jälkeen voin paremmin ja kykenin elämään lähes normaalisti. Jokainen lääkäri on sanonut minulle että Borrelioosi on hoidettavissa mutta ei parannettavissa kokonaan. Joskus oireet voivat olla poissa vuosikausia. Pelästyin koska antibioottihoidot ovat niin intensiivisiä ja vaativat itsekuria. On kuin sairastaisi todella kovaa nuhaa tai kaatuisi toistuvasti lumilaudalla." Hilfiger on käyttänyt antibioottia viimeksi noin vuosi sitten. Sen lisäksi hän käyttää homeopaattisia valmisteita ja noudattaa terveellistä ruokavaliota.
"Nyt kun voin paremmin, aion osallistua Time for Lyme -järjestön toimintaan. Aion kertoa pitkien antibioottihoitojen välttämättömyydesta. Useimmat ihmiset eivät ymmärrä minkälaqisesta taudista on kyse eivätkä usko siihen." Hilfiger on järjestänyt järjestön hyväksi esim. huutokauppoja sekä VIP lippuja Hilfigerin muotinäytöksiin jne. "Vuosien sairastaminen on ollut haastavaa. Jaksoin taistella itseni ylös sängystä koska toiveenani oli että voin joskus tukea ja auttaa muita sairastuneita."
Hilfiger's experience with Lyme far from fashionable
Lisa Chamoff, Staff Writer
Published 09:50 p.m., Monday, March 28, 2011
* The Greenwich-based nonprofit Time for Lyme will honor Ally Hilfiger Saturday with the first-ever Star Light Award at its biannual gala at the Hilton Stamford Hotel. Hilfiger is the 26-year-old daughter of fashion designer Tommy Hilfiger. Time for Lyme advocates for better research and treatment of Lyme disease. Photo: Contributed Photo / Greenwich Time Contributed
Ally Hilfiger may have a surname synonymous with fun and youthful style, but for years the part-time Greenwich resident struggled with pain that left her feeling far older than she was.
While growing up, the now 26-year-old daughter of fashion designer Tommy Hilfiger went to several doctors, who diagnosed her with everything from arthritis to growing pains. Though Hilfiger was bitten by a tick at age 7, the insect tested negative for Lyme disease, as did later tests doctors performed on her. Some test results were "borderline positive," she said.
The pain, Hilfiger recalls, was "excruciating," and often left her sitting in the bathtub for hours or walking with a cane. She also had flu-like symptoms and trouble sleeping.
"I couldn't put lotion on my legs because it felt like I was being beaten with a baseball bat," Hilfiger said during a recent phone interview. "I was like an 80-year-old woman."
Finally, when she was 19, Hilfiger saw a psychologist who was familiar with Lyme disease, and recognized the symptoms in Hilfiger. She referred Hilfiger to a doctor in Danbury, who diagnosed her with Lyme disease.
"This was like winning the lottery for me," Hilfiger said. "I was so relieved."
Hilfiger's experience with negative test results and misdiagnoses is not uncommon, said Diane Blanchard, co-president of Greenwich-based Time for Lyme. The nonprofit, which advocates for better research and treatment of the disease, will be honoring Hilfiger Saturday with the first-ever Star Light Award at its biannual gala at the Hilton Stamford Hotel.
Blanchard said she is hoping Hilfiger will help the organization by speaking out about how Lyme disease affects young people, especially since children under 12 are at greatest risk for contracting the tick-borne illness.
"I'm very excited about this because I think that young people, their plight is not understood, and Ally is a beautiful spokesperson in every way, and she can speak to the issues with great passion and understanding since she's experienced it," Blanchard said. "Young people have someone like Ally to relate to."
At the gala, the organization is also honoring Richard Gerstner, an IBM executive and venture capitalist who faced a long battle with Lyme, and Dr. Karen Newell, who is conducting research into immune response to the disease.
Blanchard said one problem stems from the way patients are tested for Lyme disease. The test for Lyme, which looks for the presence of the antibody, not the bacteria, is unreliable, she said. Over the past decade, Time for Lyme has awarded millions of dollars in research grants, hoping scientists can develop better tests and treatment for the disease.
"Time for Lyme is working very hard to support this kind of research to find that gold standard diagnostic test and fund research that can help treat everyone," Blanchard said.
After she was diagnosed, Hilfiger went on and off antibiotics for several years, going through periods of ups and downs.
"After each round I would feel so much better, and I would be so excited to be able to live life normally" said Hilfiger, who has had her paintings exhibited, and launched a clothing line called NAHM last October. "Then I would work myself into a frenzy, do a bunch of art shows ... working myself into the ground. Every doctor said this disease is treatable but not curable. Sometimes it can be in remission for years on end. That really scared me because the discipline, the consistency of antibiotics are so intense. It's like having a really horrible flu and like you went snowboarding and fell a bunch of times."
Hilfiger, who took her last round of antibiotics a little more than a year ago, said she has also taken homeopathic remedies and has tried to eat healthy foods.
"Now that I'm well enough and I feel strong enough, I'm definitely going to be the voice and face of Time for Lyme and an advocate for chronic Lyme disease and the fact that people do need long-term antibiotic treatment," Hilfiger said. "A lot of people don't understand what it feels like and they don't believe it. I'm a pretty tough cookie and I don't like complaining. It took a lot for me to say, `I'm in pain.'
Hilfiger started her work with Time for Lyme by arranging a few auction items for Saturday's gala, including VIP tickets and backstage passes to a Tommy Hilfiger fashion show, and tickets to the next Victoria's Secret Fashion Show and after-party. She eventually hopes to start an offshoot of the group for young people, though mainly she would like to talk with and support fellow patients.
"It's been a challenging road," Hilfiger said, "and I think what got me out of bed some days and kept me fighting ... was so I could help people one day."
Time for Lyme's biannual gala, "Illusions of Lyme," will be held at 6 p.m. Saturday at the Hilton Stamford Hotel, 1 First Stamford Place. For tickets or more information, call 646-502-9374 or visit www.timeforlyme.org.
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