I was lucky enough today to have had the chance to participate in the “AMDA”:http://www.amda-pompe.org Teleconference. The AMDA sponsors teleconference from time to time. Tackling various topics such as nutrition, exercise, gene therapy, insurance, respiratory complications and a lot more. Today’s topic was an open forum among patients.
I’ve wanted to participate in the “teleconference”:http://www.amda-pompe.org/communication.htm for a long time. However, living in the Philippines it meant that I had to make an overseas call. The usual time for a teleconference is about an hour. That would mean a lot of money. So I held off participating.
Oh but the wonders of technology has made it possible for me to participate today. I borrowed my friend’s VOIP phone. A VOIP phone allows you to make a call through the internet as opposed to the traditional phone line. My friend got a plan with unlimited minutes. All you need is a broadband connection and you just plug in the VOIP phone and there you go. Instant U.S. number. You can call any number in the U.S. and they can call you as well. You get a U.S. number with your VOIP phone.
The patient open forum proved to be a wonderful experience. Up until today I’ve only known patients through the GSDnet, an online mailing list for Pompe and other Glycogen Storage diseases. For the first time I heard the voices of other Pompe patients, family members and/or care givers. I’m happy to have finally heard and talked to Tiffany. We’ve been chatting for quite some time now but it’s the first time we’ve spoken to each other. I jokingly told her that it was nice to hear her distinct Texas accent. “Hey Ya’ll” or something like that.
A wide range of topics and concerns were discussed. From Bi-pap machines, respiratory concerns, Myozyme experiences, etc.. It was truly nice to hear other patient experiences. No matter how much people read, research about Pompe it’s still different hearing experiences from other people who are going through what you’re going through. There’s a kinship that is formed.
So to Tiffany, Marsha, Brian, Alicia, Ron and the other patients (sorry I couldn’t remember all the names, blame it on poor memory) it was great talking to you guys and sharing stories with you. I look forward to meeting all of you in person one day.