Rare Form Of Albinism Threatens Lives In Puerto Rico

(1 Feb 2008)
Aguadilla - January 2008
1. Wide shot of a little albino girl on a tricycle in the sun
2. Close shot of little girl, wearing sunglasses
3. Medium shot two men look at a folder with materials about the HPS network.
4. Close shot of folder's label, reading "HPS Network, Puerto Rico"
5. SOUNDBITE (Spanish) German Acevedo, HPS sufferer
"My family always knew I was an albino and that I would have some health consequences different from those of other people. I don't remember from which state, but there were some doctors who came because they already were doing a study and had discovered that Puerto Rico had the largest number of albinos. That syndrome, you can find it in most of the island's albinos"
San Juan - January 2008
6. Dr. Enid Rivera examines a young HPS patient, looking inside his mouth
7. SOUNDBITE (English) Dr. Enid Rivera, HPS researcher
"We have such a high incidence because we are an island. the islands in the world that have closed population, enclosed or limited through geography do promote the higher incidence of genetic disorders. It happens in all the islands of the world, and all isolated populations. We have been an isolated island for approximately 400, 450 years."
8. Close up examining boy's ears
Aguadilla - January 2008
9. Wide shot of Ivete Vazquez talking to Maritza Soto
10. SOUNDBITE (Spanish) Ivette Vazquez, mother of HPS sufferer.
"In my family, it's the first time. That's the case here, where most of the albinos live. Most of them are in the north region that we know of. There's very few in the southern area. It's genetic. Apparently it's due to a gene. Many link it to a relative, maybe a cousin. But in my case, we didn't have anyone."
11. Albino man cycling
San Juan - January 2008
12. Medium shot Dr. Rivera examining Albino boy on examining table, she points out spots on his legs
13. Close shot of legs.
14. SOUNDBITE (English) Dr. Rivera
"These patients major cause of death is pulmonary fibrosis. They develop this disorder in the lungs approximately the second or third decade of life. This is irreversible up to now, and this is very sad because we lose people when they are young,when they are productive. People with Hermansky-Pudlak love the same way everyone loves, they have families, they have children. And they don't deserve to die so young, and to suffer so much."
Aguadilla - January 2008
15. Wide shot of Nieve (which means snow in Spanish) talking to albino friend
16. SOUNDBITE (Spanish) Mayra Nieve, HPS sufferer
"The lungs, I get a lot more tired when I walk. My chest hurts a lot. I'm in the hospital a lot because of my lungs. I have been in the hospital a lot since I was 14 years old...I had an appendectomy, they removed cysts from my uterus, cysts from my ovaries. I was operated on 2 months ago. They removed 3 cysts from my uterus. They tell me I shouldn't be doing anything strenuous. You just keep on living your life."
17. Medium shot of old man and his wife, both Albinos
18. Wide of Albinos
19. Close shot of Acevedo looking at photos with pictures inches from his eyes
20. SOUNDBITE (Spanish), Acevedo
"I'm Type 1, which is the most abundant and common albinism. It was very hard at first because they tell you that you have a sickness that has no cure. We don't know how long you're going to live, what kind of things you can do, what kind of things you cannot do, but I just keep receiving treatment. At first I was a little scared, but now I just keep living my normal life."
21. Wide shot of Acevedo and friends laughing
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STORYLINE:
Albinism is a condition characterised by a lack of pigmentation.

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Author

Ariyani

Como educador, estou profundamente engajado no desenvolvimento dos estudantes em ambiente escolar, adotando métodos pedagógicos que valorizam conexões genuínas e são movidos por inovação e fervor. É minha vocação guiar os alunos na jornada de se tornarem uma geração notável, empregando estratégias de ensino amplamente aclamadas por prestigiadas instituições acadêmicas ao redor do globo - events.zulekhahospitals.com