|
May 2010 - Posts
-
 Here Karen stands ready to answer questions about HPS. Note that once again everyone prefers the chocolate chip platelets over the butter cookie platelets - I'm so offended - grin.
|
-
|
Boy does our map need updating.
There's a new paper out from the Netherlands documenting four new cases of HPS. One is in a child of Dutch ancestory. We've seen HPS in Dutch families before. What was new, however, was a family with three affected members who were immigrants to the Netherlands from Libya. Thus, we can now add Lybia to our global tracker of HPS cases - just further evidence that while HPS is most common among Puerto Ricans, it does occur all over the world.
|
-
  This is the second annual ATS Foundation dinner. The ATS Foundation helps to fund grants for lung disease research. This event is a fundraiser held at ATS - dinner was $100 a plate. It is, however, an excellent networking opportunity.
|
-
 Karen calls home to chat with her hubby Tommy.
|
-
Oyster Bay, NY – The Hermansky-Pudlak Syndrome Network (HPS Network) awarded Dr. Samuel Seward its Doctor of the Year Award at its 17th annual HPS Family Conference in Uniondale, NY. Dr. Seward is the only physician to have a private practice caring for patients with Hermansky-Pudlak Syndrome or HPS. HPS is a rare form of albinism that, in addition to vision impairment, causes a bleeding disorder. Some gene mutations also cause digestive problems much like Crohn’s Disease and pulmonary fibrosis. It is one of the most common genetic disorders among people of Puerto Rican heritage. Dr Seward has dedicated countless hours to help patients with HPS, often giving up weekends and family time. He has served many years both on the HPS Network’s Board of Directors and Scientific Advisory Board. “What I like best about Dr. Seward is that he listens to what I have to say. He gives me the time I need.” said Ana Guzman, one of Dr. Seward’s HPS patients. “Although I live in Kansas, I see Dr. Seward whenever I’m in New York – at least twice a year. While I like my doctors at home, because Dr. Seward sees other patients with HPS, I appreciate the perspective he brings to the table. He’s able to make suggestions based on his experience with HPS.” said Heather Kirkwood, another of Dr. Seward’s patients. Dr. Samuel Seward is the Assistant Vice President and Medical Director of Health Services at Columbia University, positions he has held since 2004. Prior to joining Columbia, he was the Internal Medicine-Pediatrics Residency Program Director at Mount Sinai Medical Center in New York. Dr. Seward is originally from Massachusetts. He received his undergraduate degree in Political Science from McGill University in Montreal. He received his M.D. from the University of Texas.
His professional experience has included training medical residents and students, co-directing a medical practice for organ transplant recipients, and providing primary care pediatrics to children in an underserved community in Rockland County, NY.
Dr. Seward’s professional interests include preventive medical care, early disease detection, and “transitional medicine”, which is the care of adult patients who are survivors of congenital and pediatric diseases. The Hermansky-Pudlak Syndrome Network was founded in 1992 and incorporated in 1995. The organization maintains a patient registry of nearly a thousand patients affected by the syndrome. It offers support and information to affected families as well as advocates for medical research to one day find a cure. www.hpsnetwork.org ###
|
-
 
Come on docs....this way to free alcohol......that's right....follow the music.......
|
-
  The opening ceremony of ATS ended with a New Orleans Jazz Band leading thousands of doctors through the convention center to the complimentary hurricane drinks - virgin ones available for those of us who don't drink. To be honest, I never saw what the big deal was about the hurricanes. It tastes like fruit punch with booze to me. Big deal.
|
-
|
It’s been quite a few weeks!
I know I haven’t blogged much lately, but boy do I have catching up to do. I started out the most recent round of traveling by heading to New Orleans for the American Thoracic Society or ATS. This time I was able to meet Karen Tillman, who came along to help man the booth, in the Atlanta airport. We were able to be on the same connecting flight to New Orleans, which turned out to be a real blessing.
I had been worried about traveling. I’d had a bad two weeks of GI problems, the kind that require one to take up residence in the throne room, if you catch my meaning. The day before I was to leave, all of the cramps and problems seemed to go away and I thought I was in the clear. I got up the next morning and everything seemed to be fine until I got to the airport. The hour before I got on the plane I was in the bathroom three times! Once in the air, I had to violate the seatbelt sign for an emergency run. Thankfully the flight attendants didn’t give me much grief so I didn’t have to go into elaborate explanations about the consequences if they didn’t grant me access to the bathroom.
Once on the ground in Atlanta with Karen, there were a few more runs. It’s so much easier to go to the bathroom when traveling when someone else can watch the luggage! I was so glad to have Karen with me too as I just felt so weak and out of it.
We arrived at our hotel and wasted no time hitting the ground. Donna and Ashley were already at a networking function and we were to join them. We set out in the sticky humidity of New Orleans to find the hotel where the function was being held and eventually made our way there.
While this was a busy year for us at ATS, thankfully it wasn’t as bad as some other years have been. Donna is no longer the President of the Public Advisory Roundtable so she’s able to be more involved with the rest of us. The week was a blur of attending lunch after lunch, dinner after dinner, mixing and mingling and telling the HPS story at every possible opportunity.
We also, of course, manned the booth on the show floor.
After about a day my tummy issues improved, but were replaced by a sinus infection. My hearing never did return to normal after my ears had been popping on the plane. My throat was sore and I felt chilled. After just one day in the booth, I had lost my voice and was getting very dehydrated.
It was so frustrating as these meetings are so important and Donna needs me to be on my game. I felt horrible though. The night of the President’s Dinner, a major mixer for networking that was to be held at an art museum, I had to cave in and stay home to try to get some sleep and recover.
The last day of ATS all four of us attended a session held by the FDA. Representatives from the FDA explained why they had decided to require another clinical trial of Pirfenidone before it could be considered for approval.
To be honest, it was a very depressing session, but it was also very useful. It was useful to hear the doctors debating the issues. It seems as though the FDA is holding potential drugs for pulmonary fibrosis to a very high standard. As one doc put it, if steroids that are used every day had to meet these standards, they would have never been approved.
We learned that there is a section in FDA regulations allowing them to be more forgiving when considering drugs for diseases like AIDS or cancer, provided they aren’t harmful, because of the deadly nature of those disorders. The trouble is pulmonary fibrosis is just as deadly and there are NO treatments. We came to the conclusion that we’re going to have to expend some grass roots energy to get the FDA to see pulmonary fibrosis in the same way they see deadly cancers and AIDS. When we get home, Donna and I will be speaking with some other patient support groups and formulating a plan. Stay tuned.
|
-
I took this before everyone was really seated. It really was a full house. In the afternoon several experts in different kinds of lung disease gave various presentations on lung health. They were wide ranging, from how indoor and outdoor air can impact lung disease, to the importance of diet and exercise, to a doc. that gave a presentation on the genetics of pulmonary fibrosis. We were thrilled that he included Hermansky-Pudlak Syndrome on his slide as a cause of pulmonary fibrosis. It made our day!!! We really are getting somewhere in the lung world thanks to the great docs we meet at this meeting.
|
-
-
 The Public Advisory Roundtable held a patient session called Meet the Experts. Essentialy, there were global experts on various types of lung disease and the patients could sit around a table with them and ask questions. Of course, we didn't think anyone with HPS would show up but us - we don't know of anyone with HPS in New Orleans - but Dr. Gochuico from the NIH agreed to man our table anyway. We wanted to be there, even though we knew we wouldn't have a lot of patients like some of the other lung diseases, because we wanted to brand HPS. We wanted to be included in the thought process so that we too have a seat at the table. It also gave us some time to talk to Dr. Gochuico. They have some new ideas about the pulmonary fibrosis of HPS. I don't want to get into them because they are just that - ideas that haven't yet been investigated or tested. still, it's so great to know the cogs of thought are still turning and new ideas are being bantered around at NIH. NIH will be asking some of us to come back to help investigate these ideas, but it won't be masses of people. Instead, they'll carefully select certian patients based on their medical histories and the likelihood that they would have what the researchers want to look at. Just be ready to volunteer should you be needed.
|
-
-
-
  Being the Year of the Lung fans that we are, I couldn't help but take a few photos of all of the Year of the Lung signage around the convention center. It also got several mentions at the Public Advisory Roundtable Breathing Better sessions. Above, Karen and Ashley pose next to a Year of the Lung sign.
|
-
 Here's Karen and Ashley putting the finishing touches on the booth.
|
More Posts Next page »
|
|
|