Three Village People Companion: Summer Edition
Villager in the Spotlight:
Augusta Sisler - Founder of the World Adhesion Foundation
One Woman, Making a Huge Difference!
by Charlene Burton
Sitting across from Augusta Sister; you would think she hasn't a care in the world. Her bright smile and twinkling eyes reveal none of the suffering or heartache that she has endured during the past several years. When she speaks, all that shines through is her intelligence, wit, and optimism. You would never guess that she has had dozens of surgeries or that she is in almost constant pain. Augusta, "Gus;" suffers from Adhesion Related Disorder or Scar Tissue Disease; a little known but life altering condition which generally occurs after a surgery or trauma.
Adhesions are internal bands of scar tissue and are almost an inevitable consequence of surgery. Sometimes this scar tissue can go astray and attach itself to abdominal walls or other organs, wreaking internal havoc. Subsequent complications include bowel obstruction infertility, pain, and difficulties during future surgeries. Although some consider adhesions to be the most common problem related to surgery, odds are that the average person has never even heard of them. Insurance companies, and even some doctors, are not familiar with the devastating effects of adhesions. "This is not a condition that is addressed at length in medical school." Gus explains. Perhaps that is why she was told repeatedly that "adhesions don't cause pain; it's all in your head." The lactic of knowledge and support are probably the hardest part of dealing with this disease.
Mostly women who have had abdominal surgeries are targeted, including gynecological or obstetric procedures; however adhesions can occur with any surgery, even dentistry. Gus seems to have suffered in all areas, at one point having 60 pounds of fluids on her legs after having had a 12 hour surgery to detach her liver stomach, ovary and small intestines from her abdominal wall.
In spite of living with the consequences of this debilitating disease, Gus will not be deterred. Her passion and resolve to make a difference for those suffering along with her make her a force to be reckoned with.
Five years ago, she started the World Adhesion Foundation so that "no one would suffer the loneliness like I did." Once she created the group, she discovered two more fellow Adhesion sufferers who wanted to team up with her in her fight; Donna and Melissa. They refer to themselves fondly as "The Three Adhesioneers." I spoke with Donna by phone because the adhesions in and around her spine have caused her to lose all feelings in her legs, snaking it impossible for her to drive. She is also in constant pain. Telling her story was an emotional experience for her, especially when she spoke of everyone questioning tier sanity. Dedicated to helping others, she explains "I want to help as best I can because when I needed help, I relied on my family; not everyone has that." Donna was also fortunate to have Dr. Colin Brathwaithe, affiliated with Stony Brook hospital, on her side. He took her pain seriously and made it his business to seek out information and solutions. He is currently working on a barrier to prevent adhesions from sticking to abdominal walls. As fate would have it, Gus' doctor and advocate was also Dr. Colin Brathwaithe. By coincidence, or luck, Donna and Gus were recuperating from adhesion removal surgeries at the same hospital during the same time period. Dr. Bratwaithe introduced them and they formed an immediate bond. Donna spoke from the heart; "Not that I would ever wish this on anyone, but it was a relief to know that I wasn't alone." Melissa, another patient, reached out for support on the internet, and thus became the third member of the trio. Melissa concentrates mostly on patient support; Donna, as an RN, helps deal with and clarify medical aspects, while Gus, in the medical field as well, handles everything else.
To list Augusta's accomplishments would be nearly impossible, but she has utilized every possible means available to her to fight for research, education, and patient support. With the help of her lawyer, Ron Levita, she became the first woman in NY State to receive Medicare for this condition and went on to address the NYS Senate on this issue. She has enlisted the help of local neighbors such as Mike Jr. at Three Village Chemists, who helps out in any way he can, including soliciting donations. With a small home office and limited funds. Gus has managed to raise thousands in stock certificates from various companies. Her diligent fundraising efforts enabled her to donate $125,000.00 to the Stony Brook Foundation, who is involved in researching the disease. If you were looking for a leader to champion a cause, Gus Sister is definitely the woman you would want at the helm. She is an inspiration, not only to people with this disease, but for anyone who faces a challenge. She does not feel sorry for herself, nor does she take no for an answer. 1 was truly humbled speaking with her.
Gus has already achieved so much in five years, but there is still work to be done. "My true dream is to have a separate research center over at Stony Brook where patients and their families can stay while they have their surgery done." For now, she does what she can with the organization's limited funds. She makes sure that every patient that comes to Stony Brook for Adhesion surgery has a TV and a phone. During her own hospitalizations, she noticed that people often cannot afford the ten dollars a day for stays that can be quite long. She knew this was a simple way to help, creating a much more comfortable environment and giving the patient one less thing to worry about. The organization also helps patients navigate the disability system. Additionally, the foundation has several patients from other parts of the country who dream of coming to see Dr Brathwaithe, including Debbie Stringer from Ohio and Cecilia from Michigan, so that they might receive surgery that could change their lives. These women are suffering terribly and do not have the resources to travel nor the doctors locally with the necessary knowledge and skills. Gus is looking for people to donate their flier miles to help make these dreams come true. She is also looking for a grant writer who would be willing to work on commission.
With additional support and resources, there is no telling what this incredible woman will achieve. That is why we are so very proud to have tier as a neighbor in our Village and extremely delighted to put her in the Spotlight.
You can find Augusta Sisler at Health and Beauty Way on http://threevillagepeople.com.
If you would like to make a donation, please visit the website at http://www.adhesionsfoundation.org.
You can find Dr. Brathwaite in suite on Health and Beauty Way.