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The Conformer

ican'sFamily Newsletter

Summer 1997

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AN UPDATE FROM ican
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Hello!! We realize that it has been quite a while since the last Conformer was published, but we here at ican and Albert Einstein Medical Center (AEMC) have been bery busy preparing to make ican a truly international support, education, and research group. We would like to tell you about a few of the many exciting achievements which ican and AEMC have accomlished in the past year, First of all, we believe that it is finally accurate to call ican an interntational organization. We have received requests for membership and information from all over the world - from places as far away as Lebanon, New Zealand, Australia, Japan, and many other countries. It is truly wonderful to recognize that our organization has reached out across the world to provide support and information to so many people.
Also, the Registry project being undertaken by Dr. Adele Schneider and her colleagues at AEMC is really beginning to take off. They are continuing to receive completed Registry questionnaires which they are utilizing in their quest to determine a more accurate incidence of Anophthalmia/Microphthalmia (A/M), to identify the syndromes associated with A/M, and to begin to look for commonalities among responses in the Registries in an effort to help determine possible causes of A/M. Additionally, our colleagues at AEMC will be making a poster presentation at the nationwide genetics professionals' annual meeting in October. This poster presentation will describe the preliminary findings which were made based upon the returned Regisrties.
Finally, as you may already be aware, ican has made it to the internet!! We have a Web Page which has already been established, and which we hope to update and improve in the future.


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PARENTS'' PERSPECTIVES

By: Barb Duletsky

Our daughter, Anna, knew from an early age that she did not look like any of her friends. We started talking to her from the day she was born about how special she was and how much we loved her. About how God chose her out of all of the children in the world to have only one eye, and how He would help her to overcome the challenges that imploed, And about how we would all learn to heep a sense of humor, no matter wha happened.
She must have been listening because , at ten years old, she feels more at home in her own body that most of her friends do in theirs. She truly has made the most of her talents and abilities, from excelling in school to performing gymnastics. From time to time, though, we need to talk about the latest rude reaction she has gotten from another child, or sadly to say, some adult. Sometimes we cry, but only for a short while, Ultimately, Anna's wonderful sense of who she is, irrespective of her anomaly, overrides the hurt so that she can let it go. I beleive this is the key to her emotional survival.
Letting go of angry and hurt feelings is essential to building a happy life, no matter who we are. Hanging on to painful feeling only makes us cynical and bitter. Letting them go refreshes us and allows us the freedom of moving on with life. Of course it's not not easy to keep a tender and loving heart when other children call their friends over just to stare, or when you've been through surgery so many times that you've lost count. But life is even harder when we let our hearts get clogged with resentment, because that prevents us from really loving anyone, including ourseves.
While our eyes may be our window to the world, our hearts provide us with a vision for our lives. We owe it to our children to help them to paint beautiful visions for their lives, knowing that our children will rise (or fall!!!) to meet our expectations for them. Resolve to let there be no place to wallow in self-pity in your house and no time for bitterness in your scedule, Life is too short to be spent worrying what other people think of us. Help your child learn to let go of the painful feelings so his/her hands can be free to reach for the stars!!

Barb Duletsky is the mother of ten-year-old Anna, who has unilateral anophthalmia.

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We would like to make Parents' Perspectives a regular section of The Conformer. If you have a story which you would like to share with other members of ican, please contact AEMC.



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PARENTS CONNECTIONS

The ican organization and our supporters at Albert Einstein Medical Center have receive requests from many parents for personal contacts. As it is difficult for the hotline parent of the month to know all of the members of ican who would like to heop, we would like to organize a list of parents who would be interested in being a part of this project. You may choose to have your address, phone number, E-Mail address, or all of these choices included on this contact list. If you are interested in becoming a part of this resource, pleace contact ican at:

1-800-580-ican OR through the comments section of ican's webpage at: www.ioi.com/ican
so that we can mail a consent form for you to complete and return.

 

Several of our younger readers have expressed an interest in finging pen pals with whom they can correspond about issues which are important ot them. Also, younger members of our sister organization MACS (Micro & Anophthalmic Childrens Society), which is based in England have already established a pen pal system and would like to expnd their list of pen pals to include members of ican. If you or someone you know are interested in writing through either the ppostal mail of E-Mail, please contact Albert Einstein Mecial Center at: 1-215-456-8722 or aemcgenetics@icdc.com

 

Dr. Adele Schneider and her colleagues at AEMC are still collecting data to be used in the A/M Registry. If you have not yet received a copy of the Registry questionnaire and are interested in participating please contact Albert Einstein Medical Center. AEMC-1-215-56-8722 or e-mail aemcgenetics@icdc.com

 

ican welcomes Dave McDonald as our volunteer administrator. Dave will be maintaining the mailing list, answering call to the parent hotline(800-580-ican), and will be keeping ican running smoothly for our members. THANKS Dave!!


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ican's

FIRST FAMILY WORKSHOP

On April 5th, 1997 ican held its first family workshop at The Overbrook School for the Blind in Philadelphia, PA. The day was a huge success with participants from all over the country!
The day started with mingling and breakfast followed by a day full of information and fun. The speakers included Dr. Adele Schneider who gave an overview of the genetics of A/M; ocularists Joe LeGrand and Kevin Kelley, who spoke about treatment of A/M with conformers and parents' beliefs about the causes of A/M; Dr. James Katowitz, a prominent oculoplastic surgeon from the Children's Hospital of Philadelphia who spoke about surgical treatments which are currently being used and investigated for parents with A/M. A psychologist, Mary Eno, PhD, spoke about sibling issues in families with a child with special needs as the opening statement in a discussion of the parent panel. The participants in this panel were parents of children with unilateral or bilateral A/M and the discussion was open to everyone. The issues discussed included: toilet training, school, development and day-to-day life in families with children who have A/M. This panel also included members of the Visually Impaired Inservice America who answered parents' questions about helping their children with reduced or no vision to adapt to the world.
Lunch was provided during the day and gave everyone an opportunity to interact with each other, make new friends, and catch up with old friends. The children played the day away in the play/activity room under the supervision of Villanova University Nursing School students. A good time was had by all!!!
An attempt was made to videotape the conference. Unfortunately, the recording was too dark. We are however, attempting to create an audio tape which we hope to have available to any interested individuals. Please call 800-580-ican if you are interested in receiving an audiotape of the workshop.

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FYI

In 1990, Donna and Juan Castillo's second child, John, was born with anophthalmia in Miami, Florida. After three years of wondering about the cause of John's condition, the Castillos were contacted by journalists who were investigating a possible link between exposure to a pesticide called Benlate and anophthalmia. Donna thought back and remembered walking past a local farm which was being sprayed by a chemical during the early part of her pregnancey. Believing that this chemical was Benlate and that this exposure caused John's anophthalmia, Juan Castillo contacted Miami attorney Jum Ferraro to represent his family in their lawsuit against the DuPont Company, the manufacturer of the pesticide Benlate.
The Castillo's case went to court in May 1996. The trial lasted four weeks and both sides presented mountains of evidence. Ferraro called witnesses who testified that research studies showed a relaionship between exposure to high levels of Benlate and eye problems. DuPont's defense lawyers called winesses who claimed that the studies which were reported by Ferraro's witnesses were based upon untested theories. Additionally, another witness for DuPont testified that John's lack of other physical or mental problems probably point to a genetic cause of his anophthalmia. After the month-long presentation of evidence was finished, the jury deliberated for two days before returning a verdict in favor of the Castillo family. DuPont was ordered to pay the Castillo family $3.98 million.
DuPont's attorneys plan to appeal this decision and feel that they have a very strong appeal case. Jim Ferraro, on the other hand, plans to represent other families in lawsuits agains the chemical company in the future. If you are interested in contacting Jim Ferraro, you can call him at his Florida office at:800-275-3332

ican has not taken a position on the issue as to whether Benlate causes A/M. The above information is merely being provided to our readers for the purpose of keeping them informed of all news relating to A/M.


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WHAT'S NEW IN THE LITERATURE
BY:Adele Schneider, M.D.

The Descriptive Epidemiology of Anophthalmia and Microphthalmia. Bengt Kallen, Elizabeth Robert and John Harris. International Journal aof Epidemiology, 25(5):1009-1016,1996.

The authors reviewed data from three large registries of congenital malformations (Central-East France, Sweden, and California) to study the causes of A/M. They analyzed the findings of 849 affected infants our of a toal of 5.7 million births. This is the largesst epidemiological study on A/M.
They noted considerable variation in the prevalenc of A/M at birth from each registry, from 0.92 per 10,000 to 2.29 per 10,000. This variation was mainly due to te inclusion of infants with chromosomal causes and infants with major malformations of other organs as well as A/M. Major non-eye malformations were found in 73% of infants without a known chromosomal anomaly, A/M was bilateral in 53-60% of infants with miltiple malformations but only 27% of infants with isolated microphthalmia were bilateral. Isolated bilateral anophthalmia was more frequent, 53%.
Their conclusion was that studies of the etiology of A/M may be more reliable if restricted to infants with anophthalmia or isolated microphthalmia without other malformations as the recording of these cases seems more consistent. The current data being used for teratogenic studies suffers from incomlete ascertainment, based on this study.

 

Happy Birthday to the following ican members!!

Gabriel Athenson-July 25, 1995
Ryan Ellington-July 30,1993
William Hansen-August 6,1988
Timothy Keenan-July 7,1979
Alexi Page-August 2, 1992
Samuel Robson-August 17,1992
Bronwen Tagoe-June30,1992

We would like to make the Birthday List a regular feature of The Conformer. If you would like your child's special day to e printed in the newsletter, please contact AEMC at (215)56-8722.


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FYI

GOOD NEWS!!!!!

We have also been working on a compilation of resource information to provide to people who contact ican or AEMC looking for additional support or other information. If you have questions regarding where to turn for the answers to a variety of questions concerning cisual impairments, schools, Braille, assistance with the cost of travelling to see your doctors, advocacy programs, or other issurs, please contact AEMC so tha we may provide you with the information which we have gathered.

AEMC (215) 56-8722 or E-Mail:aemcgenetics@icdc.com

 

Partial funding for this newsletter provided by the Mid-Atlantic Regional Human Genetics Network. This project was supported in part by grant No.MCI-421010, from the Maernal and Child Health Program (Title V, Social Security Act) Human Resources and Services Administration, Department of Health and Human Services.

Partial funding provided by The Albert Einstein Society
Albert Einstein Healthcare Network.

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