GSDnet (for Glycogen Storage Disease Network):
an internet mailing list for those affected by any of the
GSDs - their families, friends or Physicians. For those who may not be familiar
with mailing lists, all this mean is that it works by email. If you can
type out a message & click send - those are all the computer skills
you need to in order to participate.
With GSDnet you can send messages, questions or comments to one address & a copy will be sent to all of the other subscribers (subscription is FREE.
However subscription is necessary as this is the only way to know what email addresses to send all of these copies to). You will also get copies of any messages that other subscribers
send - either replying to yours or asking their own questions or making their own comments.
Presently there are over 250 subscribers - all of whom are affected by one of the forms of GSD (McArdle's disease is type V or 5).
You can subscribe by sending this message:
subscribe GSDnet (your name)
to this address:
LISTSERV@MAELSTROM.STJOHNS.EDU
If you have any problems getting subscribed, please let me know ( I am one of the owners of GSDnet).
The
following are just a few of the people you will meet on GSDnet. |
Dave - Glendale, New
York, symptoms since childhood, diagnosed in 1995 , receiving treatment with
Dr. Slonim.
Please see Dave’s Web
Page on McArdle’s disease
Jay - Texas, life-long symptoms, diagnosed
1995, her two sisters also have McArdle's.
Chris - Kentucky, life-long symptoms,
diagnosed 1992, being treated by Dr. Slonim, also has several relatives who
have McArdle's.
When I first met Chris about 4 years ago he was wearing leg braces.
Chris started treatment with Dr. Slonim in May of 1997. Within 6 months he
had made such significant improvements that he no longer needs them.
Shelley - Fort Worth, Texas, life-long
symptoms, diagnosed 1996, Participated in a study with Dr. Haller and other
McArdle's Patients.
Sharon - Blue Hill, Nebraska, life-long
symptoms, diagnosed 1993, brother also has McArdle's. Sharon is also a patient
of Dr. Slonim's.
Jennifer - Mass., mild symptoms as child,
with severe progression as adult., diagnosed 1995.
Brenda - Gordon, Georgia, Brenda has had life long symptoms.
Arch - Saint Charles, Missouri, symptoms
since childhood, diagnosed in 1989.
Traci - Westport, CT., diagnosed in 1988, sister has McArdle's as well.
Darren - Nova Scotia, Canada, diagnosed in 1984.
Carla - San Antonio, TX, diagnosed
in 1986. Carla has had life-long symptoms.
Robbie - London, England (and Dundalk,
Ireland), life long symptoms. Robbie also has a brother with McArdle's.
Cornelia - Zurich, Switzerland,
female, age 36, diagnosed in 1976, symptoms since childhood.
Debby S.- Sycamore, Illinois, life-long symptoms, diagnosed in 1990.
John - Somerset, SW England
UK, age57, John currently uses an electric wheel chair.
Rosalind - Northern
Ireland, 31, father, brother & sister also have McArdle's
Todd - Panama .
Debby H.- 44,
lifelong sufferer, diagnosed in Jan of 1999.
Karen - Western
Pennsylvania, 51, diagnosed 1991, but symptoms appeared in teens, progressively
worsening.
Eric - Eric
was just recently diagnosed (summer 1999) at age 20. He has had symptoms
as long as he can remember.
Jenny - Canberra, Australia, age
19, symptoms since childhood.
Susan- Tampa, Fl., Susan has GSD
type VII (phosphofrukinese deficiency -Tauri's). Type V (McArdle's) &
Type VII are very similar in symptoms. Susan would like to meet others with
type VII. She has had life-long symptoms and was diagnosed in 1995.
Tim
- Southern California, main diagnosis
is VII (phosphofrukinese deficiency -Tauri's), also deficient in Phosphorylase-B
kinase, presents very similarly to McArdle's. Tim is hoping to meet
other with Tauri's.
