I am a 45-year-old Puerto Rican woman with a rare, life threatening disease called Hermansky-Pudlak Syndrome (HPS). HPS is a rare genetic disorder characterized by albinism, heavy bleeding/bruising, colitis and pulmonary disease.
Sufferers of HPS can exhibit one, some or all of the above mentioned characteristics. I exhibit the albinism, heavy bleeding/bruising and pulmonary disease traits of HPS. Currently there is no treatment or cure for HPS, although the National Institutes of Health (NIH) in Bethesda Maryland are actively working on finding one. In North America, the largest affected population of people affected by HPS are Puerto Ricans (see attached for more information on HPS).
It is the pulmonary disease aspect of HPS that is causing my health to rapidly decline. Within six months, my life has drastically changed from working multiple jobs to provide for my family, to not being able to work at all. I can no longer spend quality time with my friends, family and loving husband, as I require an oxygen machine 24 hours a day. Not long ago, I enjoyed spending my leisure time in the company of loved ones, hanging out and being the life of the party. Now, I live a limited lifestyle. I experience difficulty completing common daily tasks such as cooking and cleaning, as it is extremely difficult for me to breathe.
Due to the severity of this disease, I have been placed at the top of the national lung transplant list and am now awaiting new lungs. There is no time to wait. I need your help now. Please join my family and I in raising funds to pay for hospital bills, medication, and rehabilitation cost. This disease has changed my life, now I'm asking for your help in changing it again, for the better.
Thank you for your time and consideration.
Sincerely,
Janet Perez