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January 2008 - Posts
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Everyone give a shout out to Sandy who shared this information. I've been meaning to post it for some time. I know some of our HPS ladies would be great applicants for this scholarship. It will, however, require making some sort of contact with the local chapter of the National Hemophilia Foundation. You'll have to get a recommendation from them. I know that HPS is so rare, and so often misdiagnosed, that we don't even typically show up on the Foundation's radar. But hey, nothing ventured, nothing gained. And in the meantime, you might make some valuable contacts, both for yourself and the HPS Network. Go for it ladies! (Yes, I know some of the dates say 2006 - just check with the foundation if you need any help.) PROJECT RED FLAGAcademic Scholarship for Women with Bleeding Disorders, 2008
The National Hemophilia Foundation is pleased to offer the Project Red Flag Academic Scholarship for Women with Bleeding Disorders. This scholarship is designed to benefit women with bleeding disorders in their pursuit of post high school studies. The scholarship is inspired by the generosity of two extraordinary young women from the bleeding disorders community: Josephine Droney and Lindsey Hanson.
Click here to download applicationAbout Project Red Flag
Launched in partnership with the Centers for Disease Control
and Prevention (CDC) and with support from ZLB Behring
in 2000, Project Red Flag: Real Talk About Women’s
Bleeding Disorders is the National Hemophilia Foundation’s
education and outreach program to raise the awareness of
women and their healthcare providers about the symptoms
of bleeding disorders. Project Red Flag also seeks to encourage
proper diagnosis and treatment.
2006 Guidelines
Two awards of $2500.00 each will be granted. These funds
may be used to pay expenses related to undergraduate or
graduate studies at a college, university or an accredited
vocational school.
Who Can Apply?
Applicants must be female residents of the US and have a
bleeding disorder diagnosed by a hematologist*.
*Note women affected by bleeding disorders could include
those with a diagnosis of von Willebrand disease, hemophilia
or other clotting factor deficiency, or carrier status. Application Requirements
Please complete the requirements below:
Application Form
Essay
School Reference
Chapter Reference
Eligibility and Selection Process
Applications will be reviewed and evaluated by a volunteer
review committee. Scholarships will be awarded based on
essay, references, and outstanding achievements. The winners
will be announced during the last week of June.
Deadline
All applications must be postmarked by May 15, 2006. Please
forward your completed application and references to the
following address:
Renee LaBrew Project Red Flag Scholarship
National Hemophilia Foundation
116 West 32nd Street, 11th Floor
New York, New York 10001
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I picked up the following story on my google alerts and wanted to share it with all of you. Not only is it a great example of families doing something proactive to fight misconceptions about albinism, but I also wanted to bring this group to the attention of the HPS community. This foundation has given the HPS Network a grant that will help with some of the behind-the-scenes expenses at conference. I want to give them a great big thank you! And kudos on a job well done! Pioneer PressVision for Tomorrow
Parents work to erase stigma, ease difficulties of albinism
January 31, 2008
By J.T. MORAND Staff Writer
It was when David Zucker ran into Susan Ballis' house asking for a snack six years ago, that Susan realized her 3-month-old daughter would be fine.
David was 4 years old at the time and visually impaired due to albinism. Susan's daughter, Tess, had been recently diagnosed with albinism after Susan and her husband, Jon, noticed their little girl's eyes were moving back and forth rhythmically and couldn't focus on anything.
» Click to enlarge image
Leslie Zucker, left, hugs her son David, 10, while Susan Ballis holds her daughter, Tess, 5. Zucker of Highland Park and Ballis of Deerfield founded an organization called Vision for Tomorrow to help children like their own who have albinism. (Joe Shuman/For Pioneer Press)
» Click to enlarge image
Leslie Zucker, left, and her friend, Susan Ballis, are founders of Vision for Tomorrow. Leslie's son, David, 10, enjoys playing guitar, while Susan's daughter, Tess, 5, holds her mom's hand. (Joe Shuman/For Pioneer Press)
"I will never forget the relief I felt upon seeing David run into my house like a typical child," Susan said. "It was at that moment that I knew Tess was going to be OK."
Leslie Zucker, David's mom, and Ballis, are hoping to bring that sense of relief and hope to other parents of children with visual impairments caused by albinism and other diseases, through their nearly two-year-old organization Vision for Tomorrow Foundation (www.visionfortomorrow.org/).
Humans with albinism, often referred to as "albinos," lack melanin, the protein responsible for color of the skin, hair and eyes, or pigmentation. Albinism causes varying degrees of vision problems, including blindness.
"Our mission is to empower people with low vision to have the confidence and ability to achieve their dreams," said Leslie, who lives in Highland Park. "Our goal is three-pronged: Research, education and public awareness for low vision conditions, specifically albinism and aniridia." (Aniridia is a congential disease that can cause vision problems.)
Finding hope for the future didn't come for the Highland Park mother without fear, sadness and, finally, determination.
Leslie recalled that the day after David was born, she sensed something was wrong.
"I noticed that the bottom of his feet and the palms of his hands had a mother of pearl sheen, and his eyelashes were almost iridescent," she said. "In my heart, I knew something wasn't right. He was pale, didn't seem to track objects visually. He had digestive issues."
Almost five years later, Susan, who lives in Deerfield, had a similar experience shortly after Tess was born. She kept moving her eyes constantly, Susan recalled.
Both their pediatricians said their children were normal. But later, pediatric opthamologists, made the diagnosis.
The doctor performed an eye exam, turend to Susan and Jon and said, "Your daughter has albinism. She is otherwise a normal child. Take her home and treat her like a normal child."
The diagnosis brought a mix of emotions, Susan recalled: "Relief at finally having a diagnosis, which, in the world of visual impairments is one of the best; sadness that this was something real and permanent; grief for the things that Tess would not be able to do; frustration that I could not make this better; fear about the uncertainty; and the overwhelming urge to pick up my precious little baby and protect her from the world."
Although the diagnosis for each child was better than what the mothers had been imagining (a tumor, in one instance), there were challenges to be met.
Perceptions
One was how their children would be perceived.
"Most people are familiar with the word 'albino,' but in a sensational connotation of an evil, white-haired, red-eyed person with supernatural powers," Leslie said. "This is, unfortunately, the image that has been portrayed in the film industry for far too many years."
Leslie's and Susan's albino children are like many other children, except for their complexion and vision.
Both children have several friends. David, now 10, enjoys playing the electric guitar and soccer. Tess, 5, loves mermaids, unicorns and the show, High School Musical.
But as they grow, their vision issues could create some difficulties.
The Zuckers are uncertain whether David's vision will be good enough to allow him to drive.
"David recently asked me how can he ever be a responsible parent if his child has an emergency and he can't drive them to the hospital," Leslie said. "These are the reality check moments that as a parent hit you in the stomach and call for honesty and sensitivity. I responded by saying that 911 is the option for everyone whenever there is an emergency and that driving is by no means a sign of good parenting."
Tess's motor skills have not developed at the same rate as her peers due to her eyesight.
"Albinism causes poor depth perception and difficulty with balance secondary to misrouting of the connections from the eye to the brain," Susan said.
"Tess has been receiving occupational therapy and physical therapy since 3 months of age. However, she is still delayed. She still has difficulty jumping off of things, cannot ride a bike and is slow on the playground. This affects both her safety and her socialization."
Tess can't identify faces or facial expressions, which means she recognizes people by their voices. She doesn't respond to questions unless the person asking says her name.
"Therefore," Susan said, "people think that she is ignoring them or just not interested when she does not answer their questions."
Both children must also wear sunscreen when they go outdoors since they have an increased risk of developing skin cancer.
Self-sufficiency
David and Tess are protected under the wings of their parents now, but Leslie and Susan want them to become as self-sufficient as possible. The mission of the Vision for Tomorrow Foundation is help provide children with vision impairments and their families with the resources to make that happen.
"Eighty percent of learning occurs through observation and vision," Leslie said. "Over 80 percent of visually impaired and blind persons are unemployed. With these statistics, and the fact that our children are visually impaired, we had to do something to change the outcome for their future and others."
The organization has worked closely with Hadley School for the Blind and Chicago Lighthouse. Last year, Vision for Tomorrow gave Hadley $45,000 toward the development of a course on low vision, which can be counted toward an associate degree program for those who work with visually impaired children.
"The goal of our foundation is to help all visually impaired people grow into confident adults with the ability to achieve their dreams," Susan said. "We hope by increasing education, public awareness and funding for research in this area we can help to better the lives of all affected by low vision."
For more information, visit www.visionfortomorrow.org/albinism/.
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Below is a message sent to me this morning from HPS Puerto Rico. I won't be able to watch, so if anyone sees this, tell me how it goes!
Hello Everybody
From HPS Network PR Chapter; Today 1/30/08 in Telemundo, "Al Rojo Vivo" program with Maria Celeste Arrarás. Interview with some PR HPS members (Ivette and Rick) and some albino who interviewed for a special report in Ponce.
Scroll down the page to read in spanish
Hola a todos
De parte de HPS NEtwork capitulo de Puerto Rico. Hoy 1/30/08 en Telemundo, AL Rojo Vivo con Maria Celeste Arraras. Entrevista con algunos mieembros de HPS en PR (Ivette & Ricky) y algunos albinos que entrevistaron para un reportaje especial en el pueblo de Ponce.
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Everyone keep your fingers crossed! When the conference in Puerto Rico took place a news team from the New York office of Telemundo went down and did some filming. We think that this footage is going to air tomorrow night at 5:00 pm eastern on the Telemundo network. We're not 100 percent sure, but that's what we've heard. For those that speak Spanish or just wnat to see it even if you can't understand the words, check it out. Worst case, it isn't there and you've got to change the channel.
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See above post - thought you all would enjoy this!
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Above is a video created by a Kansas City mom who has a daughter with albinism. You can see her blog, Parent of a child with Albinism, to the side on the blogroll. Check it out! She made this slide presentation. I don't know if any of these kids have the HPS type of albinism, or if any of them have even been tested for it, but I know you guys will love this. She did such a great job! I love the music too!
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The following article ran in the ATS Public Advisory newsletter. It's an interview with Donna as she is the incoming PAR President. I thought they did a nice job.
DONNA APPELL: AT THE TABLE WITH THE BIG BOYS
When Donna J. Appell, R.N., presented a poster on Hermansky-Pudlak Syndrome at the ATS International Conference in 2001, she didn't know much about the Society's newly formed Public Advisory Roundtable (PAR). She was simply a mother who wanted to enlist the physicians and scientists attending the conference in finding a cure for her daughter's devastating lung disease.
Ms. Appell is the founder and president of the Hermansky-Pudlak Syndrome (HPS) Network, Inc., a nonprofit support group for patients and families dealing with HPS, a rare genetic metabolic disorder that affects the way cell membranes are made and which can cause albinism, legal blindness, a platelet bleeding disorder, colitis and, the most dangerous symptom, pulmonary fibrosis.
Today, Ms. Appell serves as chair of PAR, the arm of the ATS that incorporates patient and family perspective into the Society's activities. It is through PAR that each year patient interest organizations like the HPS Network inform conference attendees of their work in the lung community.
"PAR has allowed us to sit at the table with the 'big boys,' to leverage and to effect progress," said Ms. Appell, who, in May 2007, joined the ATS in co-funding the first jointly funded research grant to be given to a young investigator studying HPS. "This is a major step forward in working toward a cure."
In 1986, Ms. Appell's first child, Ashley (pictured above), was diagnosed with albinism two weeks after birth during a routine checkup. Ms. Appell, who was working as an open-heart critical care nurse at the time, immediately began reading everything she could find about the disorder.
As her daughter grew, she noticed that Ashley showed signs of abnormal bruising. To understand why, Ms. Appell began to conduct her own research. "I came across a pamphlet on albinism that included a single sentence about the link between the disease and a platelet defect," she explained. She called the pamphlet's author, a doctor in Minnesota, who asked her to send him samples of Ashley's blood. He diagnosed Ashley with HPS. At the time, there were only 23 other known cases on the U.S. mainland.
When Ashley, at two-and-a-half years old, hemorrhaged and went into shock from GI bleeding, Ms. Appell and her husband became desperate. "We felt isolated, dealing with a rare disease and with doctors who had never seen it before," she said. "We needed to find out what other parents were doing and where the research community was in finding a cure . . . and we found nothing."
So she founded the HPS Network in 1993. Since then, the organization has grown on average by at least one family per week. Although Ms. Appell admits it is "run on a shoestring" with only two paid part-time staff members, the network provides education and support, organizes annual conferences and maintains a patient registry.
With all members anxious for research, in the mid-1990s, Ms. Appell discussed with the National Institutes of Health (NIH) the network's patient registry. "Our membership turned out to be a vital component for consideration for the NIH, and the HPS Network began to play an integral role in the recruitment of participants for all HPS research trials," she said.
Thanks to a collaboration forged with Dr. William Gahl, who is now intramural clinical director of the National Human Genome Research Institute, Ashley's was the first HPS case studied at the NIH. And in 1995, the first research protocol was approved for other HPS families. Individuals with HPS often die in their forties or fifties as a result of the disease. And although HPS has been identified in virtually all populations, it is most prevalent in people of Puerto Rican descent.
At present, neither the full extent of the disease nor its basic cause is known. However, because two of the eight genes associated with HPS, HPS1 and HPS4, predict the development of lung fibrosis, "we know who will get fibrosis before the first signs appear, so the progression of the disease can be studied," said Ms. Appell. Among the promising protocols currently under way, she adds, is a phase III clinical trial testing Pirfenidone, a drug that may slow pulmonary fibrosis by blocking the biochemical process of fibrosis, or scarring.
Ms. Appell lives in Oyster Bay Cove, New York, with her husband, Richard; their two children, Ashley and Richard; and Ms. Appell's parents. The family hobby is boating.
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 Kevin O'Brien (nurse pratitioner from the NIH), Carman Camacho (board member HPS Network) and Donna Appell (President HPS Network sit at a table with other HPS'ers in Puerto Rico.
Below is a story that ran in the American Thoracic Society's Public Advisory Roundtable newsletter. The story, written by Donna Appell, is about our September HPS conference in Puerto Rico. There will be a shortened version in the HPS Newsletter (coming soon, I swear!). This is exciting because it really gives HPS some exposure in the lung research community. Way to go Donna!
HPS HOLDS MOST SUCCESSFUL EVENT EVER IN PUERTO RICO
In late September 2007, the Hermansky-Pudlak Syndrome (HPS) Network hosted its most successful conference ever in Puerto Rico, where due to a "founder effect," HPS is very prevalent.According to current statistics, one in 1,800 Puerto Ricans have been diagnosed with HPS, and one in 21 are carriers of the disease.
In 2006, the HPS Network held its conference in Arecibo, a town located in the northwestern part of the island. This year, to provide support to individuals who could not travel to that area, the meeting was held in Caguas, which is south of San Juan.The HPS Network has tremendously capable and energetic coordinators in Puerto Rico and the team did a great job.
About a month prior to the event, we started a "door to door" campaign and handed out flyers in markets and churches.William A. Gahl, M.D., Ph.D., Clinical Director of the National Human Genome Research Institute (NHGRI), arranged for members of his team to arrive in Puerto Rico four days early to speak to members of the press and to lecture residents and nurses at local hospitals and medical schools.
Thanks to these efforts, coverage of the event appeared on the front pages of a number of newspapers, including Primera HORA and La Perla del Sur! Puerto Rican radio stations also broadcast an interview with Thomas Markello, M.D., Ph.D., of the NHGRI's Medical Genetics Branch.We spent a day at the Centro Medico School of Medicine in San Juan and spoke with department chairs and the associate dean about enhancing curriculum and about the misdiagnosis of pulmonary fibrosis caused by HPS.
On a trip to Escuela Loiza Cordero, a school for the blind and visually impaired, we were surprised to be met by a reporter upon arrival. Thinking we would be speaking to parents and teachers about students with HPS, we were amazed to spend the first hour of the visit with four teachers with HPS. They were interested in the National Institutes of Health's Phase III drug trial for Pirfenidone. One gentleman had brought his PFTs with him and even though there was a language barrier, he showed us the HPS Network's 1(800) number on his cell phone's speed dial!
From there, we hit the hills and traveled to the home of a 28-year-old woman with HPS, who had called the Network in New York two months before to discuss her albinism and shortness of breath. She did not understand these were symptoms of HPS, let alone pulmonary fibrosis. We referred her to the NIH, but it was determined that she was too ill to qualify for the protocol.Inquiries were made on her behalf to see if she could get a lung transplant in the United States, but the biggest impediment was insurance or lack there of: Puerto Rican Medicaid coverage is not accepted in the U.S.
It broke our hearts, and spending time with her two young children made you wish you could just rip your lung out and hand it to her. It was difficult leaving her, but our formal programs began that evening.
In the Centro de Bellas Artes de Caguas, Dr. Gahl gave a presentation on the diagnosis and treatment of HPS patients with pulmonary fibrosis. Bernadette Gochuico, M.D., of the NHGRI, spoke about the cellular changes in HPS patients' lungs, while Melissa Merideth, M.D., of the NHGRI's Gynecology Branch, discussed the standard of care for women who suffer from the disease. Attendance at these presentations increased tremendously from last year: more than 40 physicians were present and a total of nine continuing medical education credits were awarded over the course of two days.
The following day, we opened the doors to include the families. We hired three yellow school buses to transport attendees, since many patients with HPS are also legally blind and cannot drive. More than 400 people came and it seemed that everyone was energized just meeting one another. Two Puerto Rican physicians who specialize in ophthalmology and hematology gave a very informative presentation. Doctors arranged for free pulmonary function testing, for which there was a line all day. Private consultations were offered by Kevin O'Brien, C.N.P., a clinical nurse practitioner at the NHGRI, to answer attendees' health questions, and Dr. Merideth conducted interviews and a survey regarding HPS patients' OB/GYN problems.In the middle of the morning, a television crew arrived to tape a live visit from the town's mayor, who gave a welcome speech.
It was an amazing moment when that afternoon, the woman that we visited the day before arrived in her wheelchair with her husband and oxygen in tow. We advertised our t-shirt sales to raise money for her lung transplant and the entire room gave her a standing ovation.The event was a great success, though it was terribly sad to see so many people with HPS in need of education, treatment and a better quality of life. The stars were aligned for us, however, because about two weeks later, our young lady in need of the lung transplant was granted $350,000 in catastrophic funding by the Puerto Rican government, which has enabled her to come to the U.S. and get on a transplant list.
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It's that time of year again. Just in case you didn't get your registration materials in the mail, the registration is open for the 15th annual HPS Conference! You can download a registration packet at www.hpsnetwork.org. I'll blog more about conference later! Stay tuned - you won't want to miss it.
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A big congratulations to Holly Tillman, the first recipient of a scholarship from the HPS Network Scholarship program. This new program was set up by the Kirshner family in honor of Martin Kirshner, a long time and very loyal supporter of the Network. Martin Kirshner was a big believer in the power and importance of education, thus his family felt this was the best way to honor him.
The next round of the scholarship program will be kicked off at the 2008 HPS Family Conference in New York.
The program is open to those with the HPS type of albinism or their children who are pursuing educational opportunities. These opportunities could be a four-year school, trade school or any sort of continuing education. It doesn’t have to be in pursuit of a degree.
Our first winner, Holly Tillman, has a mom with HPS and is going to school to become an art teacher. She’s constantly supported her mom and the Network by raising more than $1,000 for the Network every year. She also recruits her friends to help out with fundraisers and raise money.
Congrads Holly!
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 Keep those prayers coming for Elizaira! Several of you have been e-mailing and calling wanting to know how she's doing. She has made improvement. She's out of ICU and may be going back to her apartment near the transplant center in a few days. She's also at the top of the lung transplant list - so we really need some of those prayers. It isn't that anyone wants lungs to be available - but if they are we hope they'll work for Elizaira. Also, please pray for her family. I'm sure her children are missing their mommy.
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Grief is a part of the HPS community. Until we find a cure, it probably always will be. Knowing how to handle grief as a community, however, is almost as complicated as the emotion its self.
I suspect that people regularly pass away from HPS that I never know about. I know that people pass away from HPS never knowing they even had it. Different segments of the HPS community, however, know different people. I didn't personally know Jose, but my friend Rebecca did. I've struggled with whether to post the following item to the listserv because only two people on the HPS adult listserv knew Jose. Yet, I feel so strongly about honoring everyone with HPS, and supporting one another in our times of need and grief. People should feel free to post to the group if they're going through a tough time and need support.
How do you weigh the needs of newly diagnosed people with the needs of more seasoned HPS'ers who have experienced more losses? How to we honor those losses while remaining focused on the positive things the future has to offer? Those that have gone before us didn't have the benefit of what medicine learned from their experiences. We enjoy that benefit.
I decided to post Rebecca's honoring of her friend here. This is a place where I try to preserve HPS history, and Jose definately had a role to play in that history. So, for now, perhaps this is a fitting place to honor him.
We also honor those that went before us at the HPS conference. We do it quietly at the crack of dawn on Sunday morning at a small memorial service. Everyone is invited to share memories of friends that have passed. We do it this way because the conference is so upbeat and positive. We don't want to frighten or depress newer people. But, some of the more seasoned crowd really do need a place to grieve their losses. Yet, sometimes waiting until conference just seems like too long when feelings are raw.
I don't know if I'll ever completely feel at peace with how to handle this issue.
But, I do greatly appreciate that Rebecca took the time to remember Jose and share her memories with us so that we can keep them forever.
From Rebecca:
I was introduced to Jose Ocasio by Carmen. He and I started to have frequent phone conversations and became phone buddies. We spoke almost daily while he was staying at the NIH. He would speak to my mom also because he had lost his mom and she became kind of a mother figure to him. You kind of feel like you know a person when you talk that often even if you have never met I'd like to honor this man in my way and I feel that no matter what I say, it'll never capture his true essence.
You just had to know him to get how playful and fun he was.He told me that he did a little bit of everything in his life. When in college he studied medicine and science a lot and that he was currently a teacher. He was a musician and played with some of the greats in Latin music including Willie Colon and I think Harlow, but my memory is hazy. He said was very particular about how people played but not about the music he actually listened to. He would play his guitar while he was at the NIH and one day while I was on the phone, he played a little for me. It was beautiful.
He was very outgoing, talkative, playful and warm. He was married with 2 children, a girl and a boy. He was very close to his children. He would say that his son was a little shy but his daughter was outgoing like him. He had his moments but he was generally optimistic and a religious man. He spent this last Christmas with his family and they played music (his brother is also a musician) and they even sang, so I am glad he at least had those moments.
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I have been dreading the new doctor hunt the way you might dread being strung up by your fingernails – I just haven’t wanted to do it and so have been putting it off. But I can’t put it off. My insurance has changed and my beloved doctors are no longer on my plan. This means going on a new doctor hunt and starting all over with someone new.
I know it’s wise to start to establish a rapport with someone now, while I’m having few problems, so that when things act up we have an established working relationship. Hopefully, by then I will have built up some credibility so that they don’t think I’m a nut when things seem a bit weird.
But, like a spoiled child – I don’t wannaaaaa……
Yesterday I finally made an appointment. Since KUMed isn’t on my insurance plan, I decided the next best hospital for me was probably St. Luke's – they’ve got a good-sized hospital only five miles from my office and another larger hospital campus downtown.
After talking to Dr. Seward and Donna, I decided this time around I probably should go for an internal medicine doc as the “team captain” and my primary guy rather than family medicine. Don’t get me wrong, my experiences at family medicine at KU (with the exception of one very junior doc early on) were excellent. That’s why I don’t wan to leave.
I pulled up a list of all the internal medicine docs with privileges at St. Luke’s South. I looked at how long they’d practiced medicine and where they went to school. I really wish the site had given a tad more information about them (like the KU site does) such as what their specific interests are, whether they’ve got a research focus, where they’ve been published or even a little indicator of their personality like a hobby or something.
The scant information had me feeling a bit lost. I called the nurse help line, explained HPS and my “hunt” and the very helpful nurse gave me three names that she suggested. One was on my short list from my own search – so that’s who I chose to make an appointment with. We’ll see how it goes.
I think my blood pressure went up just making the appointment. Will this guy the sort of collaborative listener I like, or will he be the in and out type that you can’t pin down for five seconds?
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Last night Ana sent me the following link. I couldn't get it to work immediately and had decided to put it in my "things to do later" pile. After all, things are quite busy behind the scenes in HPSland right now. I'm unable to even respond to everyone's e-mail right now. But then I called Karen as she's been helping me with a photo issue I'm having with the newsletter.Karen had seen the link that Ana was trying to share and urged me not to put it in the "things to do later" pile. So, I didn't. And I'm so glad I didn't! This MySpace page was created by two young ladies who are suffering with rare lung disease. They've set up this page collecting the stories of people who have rare lung diseases. It's what I've wanted to do for some time now. I said this early on here on this blog, but it's been a while and thus I suppose I should say it again. I would love to post the stories of other HPS'ers - lung disease or not - so that we can have a growing archive of people's stories. These stories are so useful when we're off speaking in public at medical conferences or trying to generate press interest. And, I think it's so valuable just to record our collective experiences. So, if you're interested in reading about people with all sorts of rare lung diseases, check out this site: http://www.myspace.com/rare_lung_disease If you'd like to send me an essay on your experiences living with HPS - either as a patient or a loved one - send it to: hkdawn@yahoo.com.
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Excuse the sacrilege – it’s just how I feel. Last week was a tough week in HPSland. We lost two HPS’ers. Although I didn’t know either of them personally, the loss of anyone with HPS affects me. I’ve debated about whether to blog about it as most HPS’ers didn’t know either one of these people and I don’t want to upset everyone when there’s no need.
But, I feel it’s the right thing to do – whether we knew them or not. They were part of “our army” and they were the brave ones that went before us. They are the ones that have helped to pave the way for better treatments, and one day the cure. How can we not honor them?
Although my grief isn’t of a personal nature, I can’t help but react. Last week we were having all sorts of troubles with the magazine, troubles that ordinarily would have me plastered to the ceiling – and yet in the wake of this wake up call, no problem at work seemed really that important.
Every day since leaving NIH I’ve thought about my pulmonary function tests and how wonderful they were. But these two losses were a sobering reminder of just how lucky I am right now. They are a sobering reminder of just how much work we have left to do, and just how urgent it really is.
My grief reaction, having not known them personally, isn’t so much wailing and tears – it’s frustration. I’m frustrated that I have such an important task to work on every day, and yet it’s the thing I do at night, after work, when I’m tired and not always totally on top of my game. I’m frustrated that the most important thing in my life, working to help find the cure for HPS, constantly takes a back seat to mere financial survival. We need to do more and we need to do it now. It truly is a matter of life and death.
And to the two that have gone before us – salute. We honor you both and all that you did to help us in this journey.
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