Medical Symposiums

sympos1.jpg (7532 bytes) NPS Conference 2001:

Thank You To Joanne Mansour and Denise Latanzi For Providing The Information This Report Was Compiled From.

This years Nail Patella Syndrome Worlwide Medical Symposium was held at the Ramada Inn in Palmdale, California on July 27 & 28, 2001. Ninety One (91) people attended this years conference. Of those there were fifty eight( 58) affected by Nail Patella Syndrome. The most exciting thing right now is that approximately twenty (20) of the attendees found out about Nail Patella Syndrome Worldwide and this years conference through this very website! Last years Symposium was held in Arlington, TX and had fifty two (52) attendees with approximately thirty four (34) affected by NPS. This proves that our efforts to provide resources to the NPS community are not in vain. All the hard work that everyone has put forth is coming together. We are contacted all the time by people who have NPS, know someone with NPS, or have family members with NPS. This is amazing when you think of the fact that most of us knew very little if anything about this strange syndrome, much less knowing anyone outside our own families with it, just not very long ago.

People began to arrive in Palmdale as early as Wednesday evening and continued to arrive right up until Friday morning. There were families that traveled from as far away as Scotland, England, British Columbia and from all over the United States. Needless to say, there were a lot of people suffering from Jet Lag! None of that seemed to impede anyone's ability to have a fantastic time together.

We wanted to have more of a family theme so many people brought their spouses and children. We had 18 children (not including teenagers) attend this year. Childcare was provided by Ms. Denise Honlon in one of the hotel rooms provided by Celeste Chandler. Celeste also provided the children with lots of arts and craft supplies to make various craft projects (THANKS CELESTE!!).

When people arrived Friday for the first day, we had them check in, fill in a registration form, and fill in a form for Dr. Zaretsky. Then they were given all of the paperwork (program, medical brochure, IBS booklets, leg brace pamphlets, etc...).

We then had the T-shirt fashion show. The two t-shirts were paraded into the room by two very lovely ladies complete with musical accompaniment. The t-shirts look great, it was really difficult to choose one to take home. If you're familiar with concert tour t-shirts, the black t-shirt was designed in a similar fashion. On the front right corner is Nail Patella Syndrome Worlwide and the back has the dates and locations of the last four conferences. Very well designed shirts. They come in only one size -- XL. If anyone is still interested in recieving a shirt, send an email to the Public Relations committee expressing your interest. At this time, we dont know if there will be anymore reprints of the t-shirt. It depends on how many requests for more come in. Someone will let you know.

Following this, we began with our speakers. The first speaker was Liz Sweeney. What a delight she is. She shared with us her experiences of visiting with 123 individuals with NPS by driving around the UK visiting 44 different families to gather data for her study. She shared her statistics on what symptoms she found in all those involved and is planning to present this work as her thesis for her Degree of Doctorate of Medicine. She hopes to publish this and make it available to all of us. Her presentation seemed to be the perfect beginning to the speakers since she gave an overview and really gave everyone the big picture. She had lots of slides showing the typical hands, knees, elbows, feet, backs, etc....

Following Liz Sweeny, was Iain McIntosh's presentation. Iain kept apologizing to those of us who listened to him give this talk before, but those listening all agreed that we need him to repeat it about 8 times or so for all the information to sink in and can be understood. He told us all about genetic spelling mistakes, RNA, DNA and more.
Unfortunately, due to recent problems at John Hopkins, he was not allowed to draw any blood at the conference. Hopefully, this will be sorted out soon so those who couldn't have their blood drawn can go to their own clinics to have it done and sent to him for study.

After a short break, Steve Zaretsky spoke to us about Orthopaedics. He had lots of photos of Matty (his NPS son, who wasn't able to attend). He shared with us his experiences in treating Matty's elbows (he has webbing and contraction). Dr. Zaretsky also explained the pros and cons of serial casting and splinting and emphasized the need for early intervention. Following his presentation, his wife, Jane, modelled several knee braces, designed to move your patella (if you have one) to the correct location.

We then took a break for lunch. Wherever you went, there were lots of people converging on understaffed establishments. So lunch was a little time consuming, but everyone had a chance to talk about the discussion so far.

Following lunch, Christine got us off our bottoms and doing some exercises.
She did a super job of teaching us to get off a chair without hurting our
backs as well as how to stretch our achilles tendons if we tend to be toe
walkers and more. She had a print out of her exercise regime for everyone to refer to.
Last years excersice regime can be viewed by clicking here. The new updated
version should be posted soon.

Dr. Jeff Towers then began his discussion about Radiology. He showed us
MRIs and x-rays and discussed the importance of these tests before
considering any surgery. He explained a lot of the symptoms of NPS and how
they are seen in these films. He also emphasized (and echoed was Dr.
Zaretsky had said earlier) that children's bones are not entirely formed and
therefore you should be very careful when considering surgery for children.

Following this was Dr. Sam Mansour's discussion of Glaucoma and NPS. He
explained those who are at risk for glaucoma, and those who are glaucoma
suspects. He also emphasized that those with no known glaucoma problems
should be tested yearly if they have NPS. If pressures are high, visual
field tests should be done and optic nerve damage should be monitored by
photographs. The good news about glaucoma is that it is treatable. There
are many drops available which can prevent blindness. A touching story here
was a woman who attended with her husband. Her doctor apparently didn't
believe her that NPS and glaucoma are linked. She now needs to wear strong
little telescopes (not sure what else to call them) on her glasses so that
she can see. Once the damage is done, it is irreversible. However, if it
is caught early, it is easily treated.

Following a short break, Dr. Lemley spoke to us about our kidneys. His
presentation was very easy to understand and very well presented.
Hopefully, in a short while, the slides of his presentation will be
available on the www.nailpatella.org website for everyone to see. He
explained how our kidneys function and the role the glomelular basement
membrane plays. He discussed diet and its role in our kidney health. He
also made another very important point, which I think we can apply to all of
our medical care. He emphasized that when you see a Nephrologist (or any
other specialist) and tell him you want your kidneys checked because you
have NPS, the specialist should not just consider NPS when examining you,
they should keep an open mind on any kind of kidney problem you might have,
not just those which are seen as a result of NPS. I hope that makes sense,
because it is an important point. Say, you are losing vision, you assume it
is due to glaucoma because you have NPS, only to find you have a totally
unrelated eye problem causing vision loss. Your doctor needs to keep an
open mind to all possible problems you have, not just those that are related
to NPS.

I'll add here that all the doctors answered lots of questions following
their presentations. Also, they all did a wonderful job of incorporating
all the questions submitted prior to the conference. They all made
themselves available to answer questions in private too which helped those
who were a litte more timid.

At this point, it was getting quite late, so we decided to move Dr. Adele
Towers' presentation until the following morning. Around this point, a
family arrived from the San Diego area. There were about 5 family members
with NPS. I think 4 of them had perfect finger nails, but many of the
common orthopaedic problems. What a wonderful family.

At this time, the women met with Dr. Debbie Krakow, OB/GYN. This was done
informally and was Q&A style. We sat in a large cirlce. There were many
questions about pregnancy, ability to carry children to term with small body
frames, menopause, tilted uteri, and more. I won't go into any details
here, but just to say that Dr. Krakow was very reassuring and spoke frankly.

That was our first day! It felt like we had received enough information to
last a lifetime, and I think it's fair to say that most of us had some sort
of a brain freeze going on. After getting dinner, many swam in the pool, or
just hung out together outside. Thankfully by this time of day, the weather had cooled a bit. During the day it was simply stifling.

Saturday morning, a family from north of Palmdale who never knew about NPS until the previous week, arrived. They had been searching on the internet and found the nailpatella.org web site and learned of the conference coming up the very next week. Another gentleman did the same thing, except he had been surfing just the night before!

Our first speaker was Dr. Adele Towers (Jeff's wife). They have a son with
NPS. Adele was given some of the leftover topics to discuss and she picked
two of them to address. The first was osteoporosis. She emphasized how
this affects both men and women and how it is important for us to maintain
healthy bones at a young age, especially if we have NPS. She also outlined
the various medications available should be need them along with the pros
and cons of each. Those of us with a small frame are more likely to running
into osteoporosis, so this is key. The second topic she addressed was
depression. She told us that this is commonly found in people dealing with
physical illnesses. She listed the criteria for depression (8 of them I
think) and that we need to have the first 2 on the list along with at least
any 3 of the others to be considered clinically depressed. She also went
through the various means to overcome depression. Many of us agreed that
just having these discussion groups have made a big difference for us in
receiving understanding and support. She also said she would post her
slides on www.nailpatella.org at some point so everyone can benefit from
them.

Following Adele's presentation, all the speakers came forward for a panel
discussion. Some of the new comers had questions for them. Also, we
discussed the whole phenomenon of being accused of being hypochondriacs, and
the doctors gave some valuable insight on how to approach your office
visits. If you have multiple orthopaedic problems, don't expect to get them
all addressed at your first visit. Doctors have limited time, and it makes
more sense to go for an office visit and just discuss one problem at a time.
That way you don't overwhelm the physician and you allow them to focus on
this wholly. You can return another time to address other problems.

I'll insert at this point, that we did interview the entire sessions on both
Friday and Saturday. I don't know how many hours of video we took, but
there is a lot. Once I have had some time to sort through it all, I will be
posting and let you know the cost and how you can obtain a copy if you are
interested.

At this point we bidded Dr. Lemley a fond farewell. Jerry was kind enough
to drive him to the airport, since I think he wanted to make sure he got a
good send off since his arrival didn't quite go according to plan. We then
began the discussion about our non-profit organization, Nail Patella
Syndrome Worldwide. Denise discussed the purpose of having a non-profit and
what our goals were. Our purpose is to educate individuals and doctors
about NPS. There will be more information on this upcoming. During this
time, the doctors took time to speak privately with any who were interested
in speaking to them. Dr. Zaretsky deserves a medal since he must have spent
time with over 20 different people. He took pictures and notes of everyone
he saw and was able to offer some advice for each to bring back to their
physicians. Dr. Jeff Towers brought his slide box and was able to look at
and comment upon any MRIs or other x-rays that people had brought with them.

The Ramada Inn catered the lunch we had and the food was great. It was nice not to have to go out for a meal. The children all joined us for lunch.

After lunch, we really got down to business. The officer and committee positions were described in depth, and the nominations we're announced.
When we were done with that, we voted. While the vote was being counted we had a few really incredible speakers, Jerry Buchanon, Carol Dobbins, Julie-Anne Pickett, and Erjuana Atkinson.

After the vote was counted the new officers were introduced.
The new NPSW board of directors is as follows:

Director - Joanne Mansour
Assistant Director/Secretary - Denise Latanzi
Assistant Director/Fundraising - Carol Dobbins
Board Member/Advisory - Celeste Chandler
Board Member/Conference - Jane Zaretsky
Board Member/Finance - Erjuana Atkinson
Board Member/Medical - Heidemarie McAlister-Bates
Board Member/Public Relations - Alan Bates
Board Member/Web - Carol Glenn

Please know that all the committees listed above are there for you. If there is anything you think NPSW could and should be doing, please do not hesitate to contact us with your comments and/or suggestions.

After the election, we broke into committee's and took as many volunteer positions as we could get (we need more volunteers on all the committees, so expect to be asked as soon as everyone gets home and life returns to normal). The committee's each put together a vision statement for the next year. After the committee's met, we had a panel discussion with the committee chairs and board officers and put together a game plan for the next year. It was great to have so much input this year!

After the vision statement, almost everyone got to leave, and the board met for the first time. We got everything buttoned up nice and legal, and we finally finished for the day, over an hour late.

The doctors all worked very hard today too. They met privately with as many people as they could to help them gain information to take to their doctors. Dr. Steve Zaretsky was kept incredibly busy, he still had a waiting list when it was time for him to leave.
I can't say enough about the quality of the speakers we had this year. They all went above and beyond what could have possibly been expected.

As at all conferences, there were some encouraging news about future
conferences. For next year, we have people interested in attending who are in the field of psychiatry and specialize in caring for individuals facing physical difficulties. Also, we have had someone who would like to address us about the benefits of massage therapy and relaxation techniques. These conferences are only going to get bigger and better.

On Sunday, we met at Denise's clubhouse at 11 AM. There was lots of good people, food, and the pool to keep everyone happy. It was nice to unwind and relax together.

Dr.'s Jeff and Adele Towers will be hosting next years conference which will be held in Pittsburgh, PA. The Towers' are in the process of obtaining grants to do some large research projects at next year's conference which will include doing MRIs and other exams on
those attending. More information will be forthcoming!

DISCLAIMER: These materials are for informational purposes only, and are intended to provide you with reliable and timely health information. It is not our aim to provide health advice or counseling, which should be sought from a licensed health care practitioner or health care organization.