I recently nominated Karen Tillman for volunteer of the week at her local volunteer center. Programs like these are helpful to not only honor our own, but to get a little press coverage for HPS. If you're working on an HPS project, and there's a similar program in your community - let us know!
Karen Tillman
Hermansky-Pudlak Syndrome Network
February 4 Greensboro News and Record
What she does: : Karen Tillman is one-of-a-kind. It's not because she has a rare genetic disorder affecting only 400 people in the continental US.
It's because she refuses to let her life-threatening condition defeat her spirit and commitment to find a cure.
Tillman has Hermansky-Pudlak Syndrome (HPS), characterized by albinism, vision impairment, and a bleeding disorder. She also has pulmonary fibrosis, making breathing difficult and causing her to tire easily.
There's no cure for HPS, but Tillman is doing her best to educate people about the obscure condition and raise money for research. She speaks to physicians and medical students at UNC and Duke and hosts an Internet support group for people around the world.
"I started volunteering for selfish reasons. I'm not interested in dying by the time I'm 50," said Tillman, 42.
Statistics show that people with HPS and pulmonary fibrosis usually die in their 30s or 40s.
"When I got to know people in the network, I fell in love. I'm growing tired of seeing brothers and sisters watch each other die, wondering when it'll be their turn. I'm fighting for me and for those I love," she said.
Tillman recently learned that her daughter, Holly, carries the recessive gene. To raise money for a cure, the family participates in the Human Race, a community fundraising event. Five years ago, they raised $400. Last year, they raised $4,000, and their goal this year is $5,000.
Why she does it:Tillman wasn't diagnosed with HPS until she was 38. Doctors had thought she had Crohn's Disease, a symptom of HPS.
She helps families through the trauma of diagnosis, like the one in Virginia whose 22-year-old daughter was recently hospitalized.
"They started doing research and discovered our website. Tests confirmed HPS. I told them I've been there, and it's going to be OK," Tillman said.
Because people with HPS are spread out across the country, the Internet brings them together. "It's hard enough having a disease that's so uncommon and feeling by yourself. Talking to others, you don't feel so alone any more," she said.
What she tells others: :Disabled from birth, Tillman has always been an active, contributing member of the community, volunteering at her daughter's school, her church, and the hospital.
"When you're disabled, it's easy to feel useless. I can't contribute to the household income, and I don't keep the cleanest house. But I've never been one to sit and do nothing, so I do what I can to help others. When you see the thankfulness in people's eyes, the feeling is amazing. It makes it all worthwhile."
Karen Tillman
Hermansky-Pudlak Syndrome Network
February 4 Greensboro News and Record
What she does: : Karen Tillman is one-of-a-kind. It's not because she has a rare genetic disorder affecting only 400 people in the continental US.
It's because she refuses to let her life-threatening condition defeat her spirit and commitment to find a cure.
Tillman has Hermansky-Pudlak Syndrome (HPS), characterized by albinism, vision impairment, and a bleeding disorder. She also has pulmonary fibrosis, making breathing difficult and causing her to tire easily.
There's no cure for HPS, but Tillman is doing her best to educate people about the obscure condition and raise money for research. She speaks to physicians and medical students at UNC and Duke and hosts an Internet support group for people around the world.
"I started volunteering for selfish reasons. I'm not interested in dying by the time I'm 50," said Tillman, 42.
Statistics show that people with HPS and pulmonary fibrosis usually die in their 30s or 40s.
"When I got to know people in the network, I fell in love. I'm growing tired of seeing brothers and sisters watch each other die, wondering when it'll be their turn. I'm fighting for me and for those I love," she said.
Tillman recently learned that her daughter, Holly, carries the recessive gene. To raise money for a cure, the family participates in the Human Race, a community fundraising event. Five years ago, they raised $400. Last year, they raised $4,000, and their goal this year is $5,000.
Why she does it:Tillman wasn't diagnosed with HPS until she was 38. Doctors had thought she had Crohn's Disease, a symptom of HPS.
She helps families through the trauma of diagnosis, like the one in Virginia whose 22-year-old daughter was recently hospitalized.
"They started doing research and discovered our website. Tests confirmed HPS. I told them I've been there, and it's going to be OK," Tillman said.
Because people with HPS are spread out across the country, the Internet brings them together. "It's hard enough having a disease that's so uncommon and feeling by yourself. Talking to others, you don't feel so alone any more," she said.
What she tells others: :Disabled from birth, Tillman has always been an active, contributing member of the community, volunteering at her daughter's school, her church, and the hospital.
"When you're disabled, it's easy to feel useless. I can't contribute to the household income, and I don't keep the cleanest house. But I've never been one to sit and do nothing, so I do what I can to help others. When you see the thankfulness in people's eyes, the feeling is amazing. It makes it all worthwhile."
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