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October 2008 - Posts
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I'm making a post office run today which means I was just packing up a box of pop tops I've collected. I thought it would be a good time to post a reminder. The Tillman family is collecting pop tops as a fundraiser for Hermansky-Pudlak Syndrome.
Karen is working with her sister's school, and one kid brought in 8,000 pop tops! The tops are being turned in for recycling and the money is going to the Network.
It's all of these efforts that add up for the Network.
If you'd like to send your pop tops to Karen (if you've got enough to make it worth the postage) send them to:
The Tillmans
4114 Landerwood Dr.
Greensboro NC 27405
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This morning Sheena, well-known in the HPS community as a great friend, source of support and an all around inspiration, lost her dear brother Kirk. Kirk was 37 years old.
Sheena and Kirk are examples of just how much work is still to be done by science. They tested negative for HPS, however, they had so many similar issues that they fit into the HPS fold very well. When it comes down to it, when you’re sharing life experiences, especially experiences coping with health issues, who really cares which gene caused the issue. It’s important for science, but not so important for moral support.
Sheena has been very active on the HPS Yahoo group and we all love her like a sister. But none of us could ever be Kirk. There’s a special bond that siblings can share. Sheena and Kirk have battled a lifetime of immune system problems, GI problems, bleeding problems etc together. Both have spent large parts of their lives in hospitals. Both are survivors of the highest order.
Kirk was an inspiring big brother. He was determined to never let his health issues get in his way or keep him from his dreams. He ran his own business and was a loved friend, brother, husband and son. All you have to do is read the comments left by the more than 200 people who have followed his story on Facebook to know what a loved man he was.
My heart breaks for Sheena. My brother and I are close, and I can’t imagine one of us ever losing the other one. It’s one of the things that motivates my work in HPSland. My brother is still largely unaffected by HPS and I’d do anything for him. I’d do anything to keep it that way.
Sometimes words just can never do justice.
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The Hermansky-Pudlak Syndrome Network continues its outreach efforts this week in Philadelphia at the national meeting of the American College of Chest Physicians meeting known as CHEST. The HPS team continues to man a booth on the trade show floor to build awareness and answer questions from physicians.
This morning Donna Appell, President and Founder of the HPS Network, delivered an educational session at a nearby meeting of the American Academy of Critical Care Nurses.
This afternoon the HPS team delivered an educational talk about HPS to interested professionals at Temple University.
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Stress, illness, drugs, exhaustion – who knows why, but I think my brain has left the building. I just don’t feel like I’m all there. It seems to be taking me a bit to process things.
Yesterday this problem was especially bad. I had a horrible GI day yesterday, worse than I’ve had in quite a little while. I had constant runs, cramps, bad lower back pain and bad joint pain – and I’m still fighting the sinus stuff. I just felt miserable all over and spent the gret part of the day sleeping or listening to the news on the radio.
Then this morning it all made sense. My little monthly visitor showed up. I guess it forgot about the IUD. Today my GI issues are better, but my bleeding isn’t. But, as long as this issue is short-lived, it’s still better than before the IUD.
I just get so impatient and frustrated when I can’t get done the things I want to get done. You’d think being off work I wouldn’t feel that way – but I do. I hate not feeling like I’m accomplishing anything.
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This evening I talked to Donna, and Nancy posted to the list. It sounds like CHEST is going very well. This morning Nancy and Donna gave a presentation about HPS to the local services for the blind office – three people at the talk seemed to have HPS symptoms and will now be tested. We hope they test negative, but if not, we’re glad we found them.
Dr. Markello presented data from the HPS natural history study about the lung disease of HPS – pulmonary fibrosis – and everyone says his talk went very well and was very well received.
So far, it sounds like the conference has been a success.
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Tengo buenas noticias que compartir a pesar de los inconvenientes experimentados en los vuelos de/para San Juan-Puerto Rico.United Airlines ha restablecido sus vuelos sin escala que han estado utilizando nuestros pacientes. Así que por el momento ya no van haber los problemas que estuvieron experimentando nuestros pacientes en el mes de octubre debido a retrasos por escalas en Miami. (Esto fue debido a que tuvimos que cambiar nuestros pacientes a American Airlines debido a los inconvenientes que estaba confrontando United Airlines)De otra parte esto también aliviara cualquier problema de oxigeno ya previsto, de los cuales iban a presentarse bastantes, aunque solo se viera envuelto un paciente!!!! Debido a que cualquier paciente que sufra el retraso de su vuelo (en cualquier aeropuerto), limitara su accesibilidad a un suministrador de oxigeno y la renta de un equipo como este se encuentra cerca de los $300.00 por hora. Lo que ascendería a $600.00 ida y vuelta por un retraso de vuelo en Miami. Sin mencionar todo el papeleo y el tiempo invertido en el tramite en cada visita que realice el paciente. Nuestra esperanza es que United Airlines continúe ofreciendo vuelos directos sin escala durante todo el año el 2009; aunque nuestro agente experto de viajes (Earlene Little) me explico que las agencias de viajes pueden cambiar sus vuelos en la forma que lo deseen.
José Salas
Coordinador de Cuidado de Pacientes
Instituto Nacional de Investigación del Genoma Humano
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This next week the HPS Network will be undertaking a major outreach initiative in the Philadelphia area. The Network will have a booth on the show floor at CHEST – the meeting of the American College of Chest Physicians, Oct. 25 = 28, 2008. Booth staff will work to answer questions from physicians about Hermansky-Pudlak Syndrome as well as generate awareness among the event’s attendees.
The HPS Network will also be speaking at a number of Philadelphia area social service agencies serving the blind and hospitals to generate greater awareness of HPS among social workers, clients and medical staff that are most likely to encounter patients with HPS.
Anyone who would like to arrange an educational session for their group, or would like to arrange to speak with representatives of the HPS Network in person, should contact the Network’s national office at 1 (800) 789-9HPS. The Network will be in the Philadelphia area again in November for a national genetics conference.
Several researchers from the National Human Genome Research Institute will also be presenting research data on Hermansky-Pudlak Syndrome and pulmonary fibrosis at the CHEST conference.
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I got a message from Jose from the NIH. I know he sent it out to those of us with e-mail, but if you're in contact with any of the HPS'ers on an NIH protocol that aren't online, would you please help to pass the message along.
Dear All,
I have good news to share regarding the “non-stop” flight from/to San Juan , Puerto Rico-
As of Nov 1st, United Airlines has re-instated their non-stop flight that our patients had been using and have become accustomed to. For now, there will no longer be any problems with layovers in Miami that the patients had been experiencing throughout the month of October (and the fact that we had to switch them all to American Airlines which caused this layover).
This will also alleviate any foreseen oxygen problems...and there were going to be many, even if it would only have involved one patient!! Because of the fact that any patient having a layover (at any airport) would entail going through an oxygen supplier and renting a portable oxygen tank/pack at nearly $300.00, for the one hour of wait-time in Miami = $600.00 round-trip. Not to mention all the paperwork and time involved to get it done...at each visit, per patient.
Our hope (OMEGA’s and mine) is that United Airlines will continue to offer this non-stop flight throughout 2009. However, as Earlene Little (OMEGA Travel Agent with 37 years of experience) has explained to me...”the airlines can change these flights at will.”
Let’s just hope that’s not the case anytime soon.
Jose Salas
Patient Care Coordinator
National Human Genome Research Institute
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Please say some prayers for Sheena, her brother and their family. Sheena had posted a while back that her brother was sick again in the hospital. He's been through so much - no human being should have to endure so much. Sheena's brother is very ill, and Sheena's just not up to answering everyone's questions and getting into details and getting a zillion e-mails. She and the family are just trying to take care of her brother right now. It's been tough. It's hard to be so far away when someone you feel is like family is going through such a tough time. I wish I could hop on a plane and fly to Canada to do whatever - be a friend, cook dinner, clean house - whatever. But all I can do is say prayers here in Kansas.
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 This past week we lost a major figure in the HPS community, Aurora (pictured here in the middle). Aurora attended her first HPS conference last year. She did more for the HPS community than I think she ever knew. She was such a source of hope to so many, especially the younger people with HPS. Aurora passed away at 74 years of age. It's never easy to lose someone, no matter how old they are. But to a community of people that often question whether they'll ever reach retirement age, Aurora's story meant a lot. Aurora didn't speak English and thus her daughter Fran joined the HPS adults listserv. It's a group typically kept to just those with HPS, but Aurora wanted to know what was going on, and so she participated through Fran. Besides, our family listserv right now is mostly parents and we didn't think Fran would find the kind of support she needed there either. Fran has been such a great addition to our list sharing stories about her mom, keeping us posted on her progress and offering so many words of wisdom and support to everyone. Now Fran couldn't leave us if she wanted to - and I hope will continue to be the voice of loved ones, as well as of her mother, in the HPS community. Aurora made one last gift to the HPS community. This week she made a final trip to the NIH. There the doctors will be able to study her to better understand the long-term affects of HPS. Every time an HPS'er and their family make this decision, I can't help but get emotional about it. They are amazing people to be able to think of all of us in the midst of their own grief and pain. Aurora was such a fighter. She fought HPS so hard. Now, I'm sure she's at peace at last. Please pray for Fran and the rest of Aurora's family. We love them all.
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A few weeks ago one of the HPS moms who has a daughter adopted from India forwarded me a contact in India. It turns out one of his friends had been diagnosed with HPS and was struggling with pulmonary fibrosis. Unfortunately, there was little help that we could offer. He was too ill, and too far away, to try for one of the NIH trials. Although he was never able to officially join the network, I've followed his story through his friends.
I'm sorry to say that this past week Santosh passed away. Even though I never knew him, I feel the loss of his friends. I know what it's like to lose a friend. And, although no one else in HPSland besides this mom and myself ever really knew about him even, I feel it's important to honor him as part of the HPS story.
Santosh had many friends with albinism in India. He seems to have been very well liked and respected. Thus, his life and story was known and felt by many others in India with albinism. Perhaps his story will have generated even just a little more awareness about Hermansky-Pudlak Syndrome in India. For that, we all, every one of us with HPS, owe him a debt. It's his story, and others like it, that help us to outreach beyond just the Puerto Rican population and demonstrate that HPS happens everywhere in the world. Every community of people with albinism should be aware of it.
So, hopefully we can continue some of our outreach work in memory of those that have gone before us, and are part of our collective story, like a guy in India we never really even knew - Santosh.
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For those following this issue, I thought you might find the following story, well, horrifying. Published on Taipei Timeshttp://www.taipeitimes.com/News/world/archives/2008/10/19/2003426387Burundi albinos hide in fear of witchcraftAFP, RUYIGI, BURUNDI Sunday, Oct 19, 2008, Page 6
Richard Ciza, top left, 19, and Francine, second right, 14, wait in the courtyard of a home in the eastern Burundian town of Ruyigi on Wednesday last week. They and other albinos have recently sought refuge after two albinos were recently killed and dismembered in what are believed to be ritual killings. The 19-year-old is an albino and knows exactly what kind of death he would have suffered if the hunters had caught up with him.“Some neighbors came to warn me that a group of killers was after me and so I ran like the wind, completely terrified,” said Ciza, who lives in Ruyigi Province.In recent weeks, Ruyigi has seen a gruesome string of murders and mutilations of albinos, whose body parts are sold to witch doctors.“People say that the body parts taken from albinos are sold in Tanzania. They put them on gold mines and that brings the gold to the surface, then you just need to collect it,” said Ciza, fear evident in his pale blue eyes.“Some fishermen also use the parts to bait large fish they think have gold in their bellies,” he said. Click on the above link for the full story.
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My friends in HPSland know I've been down lately. Besides all the help and support they've offered, they've been sending me things to make me laugh. This is another one that came from Ana. I thought it was funny, but maybe Ana and I share the same sick sense of humor! Grin!
The owner of a drug store walks in to find a guy leaning heavily against a wall. The owner asks the clerk, "What's with that guy over there by the wall?"
The clerk says, "Well, he came in here this morning to get something for his cough. I couldn't find the cough syrup, so I gave him an entire bottle of laxative."
The owner says, "You idiot You can't treat a cough with laxatives."
The clerk says, "Oh yeah? Look at him, he's afraid to cough."
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