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PC Project PAST EVENT

Patient Support Meeting
Kansas City, MO, July 2-4, 2004

The F.I.R.S.T. Family Conference is held every 2 years for those with 'ichthyosis and related skin diseases.' PC is one of the related skin diseases.

Ten PC patiens and 5 PC family members attended the F.I.R.S.T. conference. It was a epoch event - the first time most PCers had ever met others with PC.

KC was an emotional and positive, uplifting and inspiring experience. It was all about the 4 C’s --Characteristics, Coping, Caring and a Cure for PC!

Kansas City Attendee Report #2
I will describe the Kansas City conference for those who couldn’t be there.
I am a 44 year old male with PC. I am an attorney. I am married and we have a two year old daughter (she does not have PC). I have had this condition since birth, but before the Kansas City conference, I had never met anyone other than my father who had it. Until I discovered the PC project and this web site, I had the feeling that this condition was my secret.

Kansas City changed that for me. The prospect of walking into a room with ten other PC patients was a bit daunting. However, Mary and Jan share a unique talent for making people feel at ease.

Our initial meeting took place on Friday afternoon. After introducing ourselves, Mary led us through an agenda that included describing the phenotypes of PC, the genetics of PC and the care regimens we each developed. We each described how the condition manifests itself and, after some gentle urging from Jan, showed each other our feet. Trust me when I tell you that this is not something I would have done in any other gathering. There are people who have known me for ten or fifteen years who do not know that I have PC and have never seen my feet (and never will). The experience of seeing a room full of people with feet that look similar to mine was a revelation.

Our discussion of the different ways we each have developed to care for ourselves was for me the single most useful part of the conference. The subjects we discussed included the use of orthotic insoles and special shoes, reducing the caluses by trimming or debrieding, nail care, the treatment of blisters and sores, and the possible positive or negative effects of diet, vitamins and other factors. We will need to collect this information in one place and post it for all to use.

On Friday evening we were treated to a bus tour of Kansas City and dinner in one of KC’s finest restaurants. Because Mary had thought to reserve a private dining room, we were able to continue our discussion in a more informal atmosphere. Thank you so much, Mary. We touched on the difficulties of growing up with PC. I wish we had had more time for that discussion. I hope we can continue it on this message board.

On Saturday morning we met with Dr. Fleckman, Dr. Milstone and other researchers who were attending the FIRST convention. They discussed the genetics of PC and the various phenotypes. The session concluded with a physical examination of our feet and hands, in order to give the physicians an opportunity to see the different ways the condition manifests itself. We spent the remainder of Saturday morning sharing experiences and information, and discussing next steps, including the time and place for the next patient conference.

I will admit to a certain amount of skepticism when I heard about research for a “cure” for PC. I have had this condition all my life and I long ago gave up hoping for a magic bullet. Now, having met some of the experts I see that medical science may be at a point where progress is possible. But it will take more than that. It will take the energy, imagination and resources to get the key players talking to each other and moving forward. We are fortunate that Mary has thrown her considerable energies into this project, and that she has enlisted Dr. Leachman.

Kansas City Attendee Report #3:
Mere words will not be able to capture what transpired and/or the bond that was made. The greatest impact that KC has had on me is that for one of the first times ever, scientists are ready, willing and able to collaborate and partner TOGETHER to find us a cure! Or at a minimum, to provide intervention and assistance to us and the PC Project. We are no longer genetic mutations….we are now BLIPS on the medical radar screed! This is HUGE!! KC was, and Dundee will be, GROUND BREAKING CUTTING EDGE MEDICAL NEWS which affects, positively each and every one of us!

The second greatest impact I had is that one person really does make a difference. That person is not only Mary, Dr. Leachman, Jan and these incredible doctors, researchers, scientists but the other individuals I met! Dreams really do come true!! Therefore, in any way we can, each of us MUST pitch in to support the PC Project and each other.

The third impact I had was the support and how great it was to hear input and observations from spouses and significant others. I worry so much about being a burden to my husband Mike, my family and friends. It was awesome to hear Marcia, Linda, Debbie, etc. talk about how they deal w/us who have PC.

I think what we all realized in KC is that we really are not alone! Although we each look somewhat different we all have the same characteristics.

After my experience in RI, and now KC, Mike and I are doing all we can to attend Dundee Scotland. Kim, YES, go! We too are using this as an impetus to travel, meet other PC patients not just in the US but around the world!

I must reiterate what I’ve written before that if you have not identified yourself, don’t be afraid, you need to identify yourself on the Registry and complete the questionnaire. Let’s not just sit around and commiserate - We are on the verge of effectuating change. This is an incredible opportunity for breakthrough research not only for PC but other rare diseases - don't sit back. Join in and know we are not alone, we are all here for each other and dreams do come true!

Kansas City Attendee Comments:

1. We had a great time in Kansas City! It was wonderful for my husband and kids to meet others with PC, and just sit and talk. Meeting with the doctors was great, too. I didn't feel they had much information to offer, yet, but I didn't expect them to. Instead I felt that we were helping train and educate them, and it was very gratifying to have so much attention from so many specialists. And did I mention how much fun we had??

2. Hi Everybody "The dream 11 team"
I just wanted to say that it was nice to finally meet someone who has the same rare disease as I do, I did feel alone but now I feel that I'm on a team that is demanding answers and will not quit until we all are winners. Hopefully someday they will have a cure but for now it is just us who are willing to support each other on coping with the current ailments that we have. I also wanted to say that I had so much fun this past weekend that I didn't want to leave. Hopefully we will all stay in touch, you better!!!

3. It sure was terrific meeting you guys and YES, not only was it an learning experience, but a FUN one too! Call us the Dream 11 Team, and we'll be bosom buddies from this point on...sorry that we did not get the opportunity to say a proper "good bye"... 'twas our pleasure to meet you.

4.I JUST WANTED TO SAY 'DITTO' TO ALL THOSE COMMENTS REGARDING KANSAS CITY. I THINK THE REPORTS SUMMED IT UP FOR US ALL -- ALL THE PENT UP EMOTIONS AND THE SURPRISINGLY GOOD OUTCOME. I TOO, DO NOT SHOW MY FEET TO ANY ONE, EVEN MY GRANDCHILDREN, BUT MAYBE THIS WILL CHANGE NOW, AWARENESS IS THE KEY FOR SOLUTIONS!

KANSAS CITY WAS AN EVENT TO CHERISH, NOT JUST FOR THE MEETING OF DOCTORS WHOM HOPEFULLY WILL TAKE OUR PC CAUSE UNDER THEIR WINGS, BUT ALSO FOR MEETING SUCH WONDERFUL FOLKS WHO JUST HAPPEN TO HAVE PC SAME AS ME.