Carmen Camacho serves on the HPS Network Board of Directors. She was able to attend the conference in Puerto Rico and helped with translation. Below are her impressions from her trip to Puerto Rico to attend the HPS Puerto Rico Conference. Thanks Carmen for sharing your impressions with us!
It has been a crazy week. I got back from Puerto Rico on Sunday night and I haven't had time to post yet. I was dying to tell you about my trip.
For those who don't know, last weekend we celebrated the second annual HPS conference in Puerto Rico. Liz Diaz, Donna and Ashley also participated in the conference. It was amazing to see the Network grow to the point that we have a Puerto Rico Branch. Ivette Vazquez and Richi Rangel are the board directors and they mobilized the island for this conference. We were in the newspapers, on the morning news and on the radio. There was no one that didn't know we were having a conference.
Dr Markello, Dr Meredith Dr Guchicco and of course, Dr Gahl and Kevin from the NIH where also with us. Jose, who schedules visits to the NIH, came with us too. People had a chance to meet Jose and to pair a voice with a face.
We were all busy; Liz and the PR Board went to newspapers, TV and radio for an interview. Hilda, Kevin and Dr Markello, spent part of there time visiting families with HPS. Donna, Ashley, Kevin and I, visited the Trauma center and the school of medicine, with the objective of getting the HPS in their teaching curriculum and to spread the word about this condition.
At times, it was sad for me to see how my own community was ignorant about HPS and how many misconceptions local doctors have about this condition. These misconceptions varied from thinking that all people with HPS have oculocutaneous albinism to the thought that the pulmonary fibrosis related to HPS is not "as bad" as other fibrosis of the lungs. Thanks to this trip and the conference, hopefully people are more educated and better prepared to deal with HPS.
We visited the school for the blind, Escuela Loaiza Cordero. There, we met students, teachers and parents of children's with HPS. It was fun and interesting. Donna and Hilda answered question about HPS and albinism.
On Friday night, doctors were invited to a private forum that included dinner and the opportunity to discuss this condition in depth with the NIH team. We had about 40 doctors that participated in the forum and they all seem very interested. A lot of great questions were asked.
Then came Saturday, heaven to my eyes. I never saw so many people like me in Puerto Rico. For the last 14 years, I had the HPS Network supporting my family and me. It was a dream come true, to see how the Network has grown, and my people now have what I had enjoyed for 14 years. I was speechless and full of emotion to see this growth. I was exited that the local doctors were interested and that HPS has a place now in medicine.
I am glad that the film crew from Stanford were there capturing all on tape. Since I was running around so much; I can barely remember the whole thing. The emotions are all with me, the details I will have to watch video, like my wedding!!!
I wish you guys were there to see it. The HPS PR branch is already working on the 3rd annual HPS conference (2008) most likely to be celebrated in Ponce. I'm all ready for the next conference!!!!
It has been a crazy week. I got back from Puerto Rico on Sunday night and I haven't had time to post yet. I was dying to tell you about my trip.
For those who don't know, last weekend we celebrated the second annual HPS conference in Puerto Rico. Liz Diaz, Donna and Ashley also participated in the conference. It was amazing to see the Network grow to the point that we have a Puerto Rico Branch. Ivette Vazquez and Richi Rangel are the board directors and they mobilized the island for this conference. We were in the newspapers, on the morning news and on the radio. There was no one that didn't know we were having a conference.
Dr Markello, Dr Meredith Dr Guchicco and of course, Dr Gahl and Kevin from the NIH where also with us. Jose, who schedules visits to the NIH, came with us too. People had a chance to meet Jose and to pair a voice with a face.
We were all busy; Liz and the PR Board went to newspapers, TV and radio for an interview. Hilda, Kevin and Dr Markello, spent part of there time visiting families with HPS. Donna, Ashley, Kevin and I, visited the Trauma center and the school of medicine, with the objective of getting the HPS in their teaching curriculum and to spread the word about this condition.
At times, it was sad for me to see how my own community was ignorant about HPS and how many misconceptions local doctors have about this condition. These misconceptions varied from thinking that all people with HPS have oculocutaneous albinism to the thought that the pulmonary fibrosis related to HPS is not "as bad" as other fibrosis of the lungs. Thanks to this trip and the conference, hopefully people are more educated and better prepared to deal with HPS.
We visited the school for the blind, Escuela Loaiza Cordero. There, we met students, teachers and parents of children's with HPS. It was fun and interesting. Donna and Hilda answered question about HPS and albinism.
On Friday night, doctors were invited to a private forum that included dinner and the opportunity to discuss this condition in depth with the NIH team. We had about 40 doctors that participated in the forum and they all seem very interested. A lot of great questions were asked.
Then came Saturday, heaven to my eyes. I never saw so many people like me in Puerto Rico. For the last 14 years, I had the HPS Network supporting my family and me. It was a dream come true, to see how the Network has grown, and my people now have what I had enjoyed for 14 years. I was speechless and full of emotion to see this growth. I was exited that the local doctors were interested and that HPS has a place now in medicine.
I am glad that the film crew from Stanford were there capturing all on tape. Since I was running around so much; I can barely remember the whole thing. The emotions are all with me, the details I will have to watch video, like my wedding!!!
I wish you guys were there to see it. The HPS PR branch is already working on the 3rd annual HPS conference (2008) most likely to be celebrated in Ponce. I'm all ready for the next conference!!!!
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