Living on the frontlines

Here is our booth at the ATS Show in 2008. Pictured above, from left to right, are Ashley, Izzy and Karen. You'll notice a huge picture of Lisa in the back of the booth. So often the doctors think that someone with albinism has to be blonde. We blew up a picture of Lisa with the logo, "Could this be your patient?" and it was very successful in generating attention. We also proudly have our partners in research sign showing that we've given a matching research grant with the American Thoracic Society. You can see why pictures come in so handy. We have a picture of last year's group that was at a Genetic Alliance dinner. It's a mix of HPS'ers and non-HPS'ers, about half and half. In the crowd are Candice and Crystal and Kathryn and Julie and Ryan etc. We show it to the docs and ask them if they can tell who in the picture has HPS. They usually get it wrong so it's useful to make the point that people with HPS can look very different from one another...

An update on Janet - her new lung is working for the first time all on its own and everything is going well. Her breathing tube is out! Go Janet!!! We're all so excited!

A few days ago I had several posts about the systemic challenges that often lead to unemployment or underemployment in the blind community. Then I saw this article in the St. Charles, Mo. newspaper. It makes one of my points exactly. On a side note, just for a little humor, some years ago I served on an advisory board for issues concerning employment of the blind and visually impaired. There was discussion about starting a program in Kansas so that teachers could get certified to teach blind/low vision students without having to go to other states. The program never went anywhere, but there was a discussion about what the certification would be called. Someone suggested "teacher of the visually disabled." I guess I have a sick sense of humor because I started giggling in this very serious meeting. When asked what was so funny, I answered, "That would make them a VD teacher." That title was immediately dropped. Grin! Teachers hard to come by for blind, visually impai...

Janet is doing well according to her husband Anthony. They didn't take out the breathing tube this morning after all. They decided to take her out of the anesthesia more gradually. But, all of her vital signs are very good and Anthony says her medical team is very pleased with how things are going. Please keep praying for Janet's speedy and smooth recovery.

Janet came out of surgery at 2:45 am last night. The transplant so far seems to be a success. Janet’s husband called me this morning to say that the lung seemed to be working well, that her oxygen levels were great and that they were planning on removing the breathing tube this morning. This is a great day! It’s Janet’s new lung birthday! I don’t know why her transplant team decided to do a single lung transplant and not a double. Right now isn’t the time to ask such questions. The first priority is to get Janet up and around and start to wean her from oxygen. Later we’ll find out all of those details. Janet has a long road ahead of her. Often people think that getting a transplant is like replacing an auto part. You just take out the organ that doesn’t work and slip one in that does. It doesn’t quite work that way. While we’re all hoping that this transplant will give Janet many, many more years, she has essentially traded one disease for another. She’ll have to fight off organ reject...

The Vision of Tomorrow Foundation is a non-profit that is raising money for research on eye disorders like albinism. They also have been supporters of the HPS Network. Some of you might remember seeing their table at conference. They made a donation to help us offset the costs of conference. In August The Vision of Tomorrow Foundation is organizing Family Fun days August 23 and 24 in Deerfield, IL. On Saturday, Aug. 23rd from 8:00 am to 4:00 pm there will be a three-on-three basketball tournament. On Sunday, Aug 24th the tournament championship will be held along with inflatables, silent auction, raffle, free throw contest and a three-point contest. Check out the foundation at www.visionoftomorrow.org

The HPS Network got a call this evening from Janet’s family. Regular readers will remember that Janet has been on the lung transplant list. This evening she got the call and, assuming there were no last-minute glitches we don’t know about yet, she should be in surgery right now. Please pray for Janet and her family. Pray that her transplant goes well!