Founder and President
World Adhesion Foundation
|To fully understand my commitment and why I became involved in the problem of abdominal and pelvic adhesions, I have elected to briefly outline the run of circumstances in my medical history and personal life which caused this to happen.
To begin, I had an appendectomy at age 13 and at age 22 I had a benign tumor of the pancreas. For 10 years, I had a good appetite and weight, got married, found gainful employment, and returned to a normal lifestyle.
My first problem with my abdominal adhesions began at age 34 with episodic abdominal pains and bloating, inability to take solid foods, and occasional nausea and vomiting. Evaluation by my physician and work-up led to the incrimination of abdominal and pelvic adhesions as the likely cause. Following failure with conservative management, I underwent exploratory surgery followed by relief from symptoms.
Unfortunately, the above scenario would repeat itself with recurrence of the same symptoms, failure to respond to conservative treatment and surgery to release abdominal adhesions. All told I have undergone surgery 8 times. I have undergone complications that resulted in the formation of a ventral hernia (repaired) and a moderately severe wound infection. My 2 latest operations led almost to my death having had pulmonary and renal complications from which I somehow miraculously overcame.
In the midst of all of these, I began to wonder if there was something that could be done other than what was being done to treat my condition. I began to access topics on abdominal and pelvic adhesions over the internet. In the process I came in contact with MDs and other medical personnel who expressed an interest in the problem of adhesions . I also found a support group (International Adhesions Society(IAS)) and eventually was able to interact with adhesion sufferers like myself everywhere. Medical literature also became available to me.
From these efforts, I realized the following:
a) there is scant interest in solving the problem of adhesion sufferers;
b) there is a significant number of people afflicted with this disease who are making themselves known via support group interactions;
c) based on my personal experience and after talking to others, I am willing to guess that there must be a significant group of people who become physically impaired by this condition . The toll upon family relationships and income lost could be enormous.
In 2001, when I had my last 2 serious operations in conjunction with the disease in which I nearly lost my life, I decided that should I recover, I would help to find a cure for the disease due to Abdominal and Pelvic Adhesions.
What I have done was to form a non-profit organization called the World Adhesion Foundation. At times during my illness, no one had a clue what to do for me or where to send me next. I had to personally find all of the sources of what I learned about this disease.
As founder of the World Adhesions Foundation, I have also done the following:
- disseminated pamphlets about abdominal and pelvic adhesions to local hospitals;
- attended and participated in seminars with concerned groups in Detroit, Washington, D.C.;
- approached local politicians and received endorsement and support from Assemblyman Englebright and Senator LaValle;
- approached the local newspaper and got articles published ;
- appeared at and spoke briefly at a special hearing by the New York State Assembly regarding adhesions;
- attended a medical conference in Montreal, Canada;
- continue to chat with people suffering from the disease on the phone and over the internet;
- forming a website for the World Adhesion Foundation, Ethicon and Johnson and Johnson will have hot links on the site;
- formalized the World Adhesions Foundation by making it an officially registered non-profit organization.
- spoke at an FDA hearing on approval of an adhesion barrier
I have also begun brainstorming and formulation of goals and projects I would like to do as part of my foundation. I am creating the plans and infrastructure for an extremely active and successful Foundation. However, the machine needs fuel. I would be glad to discuss the particulars at any time.
Since I formed the World adhesion foundation, I have had more health problems. I have had a cyst on the left ovary removed. While in there, the surgeon noted I that I am still full of adhesions, despite having no symptoms. Since my last surgery to remove adhesions in December 2001, I have had cataracts in both eyes most likely due to the many X-rays and CT-scans over the years (that's what my eye surgeon says.) After each eye surgery, I had to have scar tissue removed with the laser. The scars made it seem like the cataracts grew back when viewing bright lights at night. (Note: I was one of the youngest patients my doctor had worked on.) I will be dealing with scar tissue problems the rest of my life so I will not give up on this cause. My latest health issue is a damaged knee that will need surgery to shorten tendons. I am sure scarring will occur.
On behalf of the cause which I represent, I welcome you to join me in my efforts.
Founder and President
World Adhesions Foundation