Ed.Madara@f140.n150.z1.fidonet.org (Ed Madara) (05/24/91)
Index Number: 15801
Recently, I had the privilege to meet Susan Laventure, who with her
husband Russell, have started a national mutual support organization for
parents of children with, and persons who have had, the eye cancer
condition known as retinoblastoma. Their young son Alex was diagnosed
with the condition and lost one eye three years ago. "It just started
out with our searching for information," Susan says. "And there wasn't
anything out there." But they looked and found several other parents in
the southern part of New Hampshire where they live, and they formed a
local self-help group. Over the last two years, it has grown into a
national support network.
"Doctors can relate facts about an illness" says Dr. David Walton, the
pediatric ophthalomogist who treated Alex. "But parents of other
children who have gone through the same experience can offer a unique
kind of support."
Retinoblastoma is most commonly found in children before they reach 2
years of age. Signs of the disease include changes in the pupil of the
eye that make it appear white or give it an unusual gleam that is most
noticeable in photos taken with flash bulbs. To prevent it from
spreading down the optic nerve to the brain and becoming fatal, doctors
usually have to remove the eye. The disease is rare, occurring in one
in 15,000 infants. Dr. David Walton notes that eye doctors are very
aware of it, but pediatricians are less aware of it.
Susan feels fortunate to beclose to Boston, where there are a number of
pediatric ophthalomogists who treat the disease and where the leading
research on retinoblastoma is being done. With the help of these
physicians and other parents, Susan hopes to get information about the
detection of the disease to doctors across the country.
To join in the national effort, or for more information, write:
Susan Laventure
Retinoblastoma Support Group
603 Fourth Range Road
Pembroke, New Hampshire 03275
Please include an SASE with your letter, and kindly mention how you
found out about their group here.
- Ed at the American Self-Help Clearinghouse
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Ed.Madara
Internet: Ed.Madara@f140.n150.z1.fidonet.orgEd.Madara@f140.n150.z1.fidonet.org (Ed Madara) (05/31/91)
Index Number: 15886
Recently, I had the privilege to meet Susan Laventure, who with her
husband Russell, have started a national mutual support organization for
parents of children with, and persons who have had, the eye cancer
condition known as retinoblastoma. Their young son Alex was diagnosed
with the condition and lost one eye three years ago. "It just started
out with our searching for information," Susan says. "And there wasn't
anything out there." But they looked and found several other parents in
the southern part of New Hampshire where they live, and they formed a
local self-help group. Over the last two years, it has grown into a
national support network.
"Doctors can relate facts about an illness" says Dr. David Walton, the
pediatric ophthalomogist who treated Alex. "But parents of other
children who have gone through the same experience can offer a unique
kind of support."
Retinoblastoma is most commonly found in children before they reach 2
years of age. Signs of the disease include changes in the pupil of the
eye that make it appear white or give it an unusual gleam that is most
noticeable in photos taken with flash bulbs. To prevent it from
spreading down the optic nerve to the brain and becoming fatal, doctors
usually have to remove the eye. The disease is rare, occurring in one
in 15,000 infants. Dr. David Walton notes that eye doctors are very
aware of it, but pediatricians are less aware of it.
Susan feels fortunate to beclose to Boston, where there are a number of
pediatric ophthalomogists who treat the disease and where the leading
research on retinoblastoma is being done. With the help of these
physicians and other parents, Susan hopes to get information about the
detection of the disease to doctors across the country.
To join in the national effort, or for more information, write:
Susan Laventure
Retinoblastoma Support Group
603 Fourth Range Road
Pembroke, New Hampshire 03275
Please include an SASE with your letter, and kindly mention how you
found out about their group here.
- Ed at the American Self-Help Clearinghouse
--
Uucp: ..!{decvax,oliveb}!bunker!hcap!hnews!150!140!Ed.Madara
Internet: Ed.Madara@f140.n150.z1.fidonet.org