American Bladder Cancer Society Inc
June 20, 2010
I am a 15 yr. survivor of bladder cancer. I was treated for UTI's for a year before being referred to a urologist. By that time it was invasive, and a radical cystectomy was performed. There was little information available online or elsewhere. The creation of the American Bladder Cancer Society has been a godsend for many patients and caregivers, because now there is a place where they can fin information, interact and get support from fellow survivors. This nonprofit organization has come about because of the efforts of survivors without the support of any celebreties, outside financial support or other support.
Even when the medical care is excellent, there are still emotional issues that bladder cancer patients experience that are not addressed. There are no local bladder cancer support groups. There are no marathons or large fundraising events to support this type of cancer. However there is a place for patients, caregivers and family, the website: www.bladdercancersupport.org, bladder cancer patients can share stories and information, gather information and keep up on research.
Female bladder cancer patients are just like those who have had breast cancer; self-concept is attacked. The patient grieves for her loss and searches for identity as a female. . Too many people aren’t aware of how much of a women’s issue bladder cancer can be. Unlike those with bladder cancer, the awareness about this cancer is very limited even though it is ranked as the 5th. most prevalent for men and women, and as prevalent as cervical cancer in women. The efforts of the ABLS and the website is vital to providing information, support, and helping to stamp out this cancer. It is a worthy endeavor and deserves more support than it gets.
I've personally experienced the results of this organization in...
I have been and still involved in trying to keep this organization going for those who are survivors, who will be survivors of bladder cancer. I serve on the board, I actively promote bladder cancer awareness and the organization in my own community.
Ways to make it better...
If I had to make changes to this organization, I would...
If I had the money, I would see that more people knew about the organization. That more support was forthcoming. I would see that more people were aware of the symptoms of bladder cancer.
What I've enjoyed the most about my experience with this nonprofit is...
Knowing that it was a place where others could find information, support and interact with other survivors.
The kinds of staff and volunteers that I met were...
The staff and volunteers are mostly survivors who wish to make a difference.
If this organization had 10 million bucks, it could...
make a difference in bringing about awareness of this disease so that lives could be saved instead of the patient being diagnosed too late.
Ways to make it better...
The strides this group has made without outside monetary support, media support or celebretity support has been amazing. Had the group had the aforementioned they could make great stides in removing this from the forgotten cancer list.
In my opinion, the biggest challenges facing this organization are...
Trying to get support both monetary and media.
One thing I'd also say is that...
The goals and aspirations of this organization is one that is more worthy of support than it is getting. Support is sorely needed for a cancer that is deadly if not diagnosed early enough, and is far too forgotten by many.
How frequently have you been involved with the organization?
About every week
When was your last experience with this nonprofit?
Board Member & As a survivor, I have worked for the past 13 yrs. trying to bring about awareness of this cancer that is overlooked and under supported.