As many of you know, I have a google alert set up for all sorts of key terms like albinism, pulmonary fibrosis etc. The following was posted on the blog of a friend of Melanie's. Melanie is one of our newest members of the Hermansky-Pudlak Syndrome family. Unfortunately, like so many she didn't know she had HPS and the lung disease sort of snuck up on her.
Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday.
Here's the post:
Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis.
With the family’s research and the recollection of one of the doctor’s treatment of one previous patient, we were able to get Melanie and the family information and questions answered regarding HPS and the best hospital for a lung transplant from the Hermansky-Pudlak Syndrome Network Inc. (www.hermansky-pudlak.org).
At the moment there is no one particular treatment for HPS, though studies are in progress for a drug trial to treat the pulmonary fibrosis at the National Institutes of Health (www.nih.gov).
Melanie was hospitalized for almost two weeks and released to be treated at home. In Melanie’s words:“Doctors told me my only chance I will have is to receive a lung transplant and to be on 24 hour oxygen at home. This condition is rare enough where only 1 of every 100 doctors has ever heard of it yet it is so prevalent in Puerto Ricans that 1 out of every 21 carries it.”
Melanie is hospitalized again, being treated for an infection in her lungs that made it difficult for her to breathe with the oxygen tank.
Since there is NO one particular treatment for HPS, Melanie, when she is released from the hospital, will undergo the drug trial in Maryland for a period of three (3) to five (5) weeks in the hopes that it will comfort her during the waiting process of her lung transplant.
An account has been set up for Melanie Hernandez for those who want or can make any donations towards the cost of hospitalization at Nassau University Medical Center (as of now, over $50,000.00) and the lung transplant itself (about $30,000.00) and relief of adversities affecting Melanie, who cannot be employed now; her mom, who will be on a family medical leave without pay and the expenses that they are currently faced with.
Any amount will be gratefully appreciated. You can send your donations by check, payable to:
Melanie Hernandez Medical Fund and mail your donation to:Natividad Hernandez179 Winthrop AvenueWestbury, NY 11590
We are asking for your prayers and positive thoughts during this difficult time, as well.
Thank you all for your immeasurable support.
Respectfully,P. Hernandez
Melanie will be 26 years old next week. Perhaps some of us would like to contribute to the fund set up to help her and her family for her birthday.
Here's the post:
Melanie Hernandez, beloved sister and daughter to Pete, Monique, Cookie, and Bugie, has been diagnosed with Pulmonary Fibrosis, a lung disease occurring in people with Hermansky-Pudlak Syndrome, a very rare disease.Hermansky-Pudlak Syndrome (“HPS”) is a genetic metabolic disorder. It is characterized by: Albinism, Vision Impairment, Bleeding Disorder, Inflammatory Bowel Disease and Lung Disease – Pulmonary Fibrosis.
With the family’s research and the recollection of one of the doctor’s treatment of one previous patient, we were able to get Melanie and the family information and questions answered regarding HPS and the best hospital for a lung transplant from the Hermansky-Pudlak Syndrome Network Inc. (www.hermansky-pudlak.org).
At the moment there is no one particular treatment for HPS, though studies are in progress for a drug trial to treat the pulmonary fibrosis at the National Institutes of Health (www.nih.gov).
Melanie was hospitalized for almost two weeks and released to be treated at home. In Melanie’s words:“Doctors told me my only chance I will have is to receive a lung transplant and to be on 24 hour oxygen at home. This condition is rare enough where only 1 of every 100 doctors has ever heard of it yet it is so prevalent in Puerto Ricans that 1 out of every 21 carries it.”
Melanie is hospitalized again, being treated for an infection in her lungs that made it difficult for her to breathe with the oxygen tank.
Since there is NO one particular treatment for HPS, Melanie, when she is released from the hospital, will undergo the drug trial in Maryland for a period of three (3) to five (5) weeks in the hopes that it will comfort her during the waiting process of her lung transplant.
An account has been set up for Melanie Hernandez for those who want or can make any donations towards the cost of hospitalization at Nassau University Medical Center (as of now, over $50,000.00) and the lung transplant itself (about $30,000.00) and relief of adversities affecting Melanie, who cannot be employed now; her mom, who will be on a family medical leave without pay and the expenses that they are currently faced with.
Any amount will be gratefully appreciated. You can send your donations by check, payable to:
Melanie Hernandez Medical Fund and mail your donation to:Natividad Hernandez179 Winthrop AvenueWestbury, NY 11590
We are asking for your prayers and positive thoughts during this difficult time, as well.
Thank you all for your immeasurable support.
Respectfully,P. Hernandez
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