It can feel lonely when you're diagnosed with a rare disease, such as Familial Adenomatous Polyposis (FAP) or Short Bowel Syndrome (SBS). After all, these are rare diseases and so there isn't near the support or media coverage available as there is for well known, more common illnesses. Finding support can be increasingly difficult depending on where you live as well. It's more likely to find support if one lives near a large research hospital such as Michigan Medicine University of Michigan, Cleveland Hospital or Mayo Clinic. Finding support is easier now than it was 20+ years ago when I was diagnosed with FAP and SBS though with technology and social media.
I remember how important my local UOAA ostomy support group was for me after my first surgery that removed my colon and left me with an ileostomy for 6 years before having a straight pull thru. There wasn't usually anyone my age at the meetings but I was able to meet others outside of my family who also had ostomies. Their reasons for their ostomies were not the same as my reason or diagnosis but it was helpful to know I wasn't alone. My pediatric GI also told me about the Youth Rally for kids and teens with ostomies or other diversions for their bladder and bowel and I attended as a camper for four years until I graduated high school and I even went back as a counselor for two years. Between the support of my family, the ostomy support group, my friends and counselors at Youth Rally, and a therapist I was able to learn how to adjust and cope to life with rare disease and an ostomy. My local UOAA support groups even helped sponsor my trips to the Youth Rally and when I returned I was allowed to share my experience and pictures with the support group.
One can find online support for the rare diseases of FAP and SBS by doing a simple search on the web or on Facebook. There are several groups for both diseases including for colon cancer, ostomies, and reversals. A well established online group is Colontown with various neighborhoods to help meet the vast array of needs and conditions that are associated with colon cancer. However, what if you want a face to face group and there isn't one in your area?
Kevin helped establish a Peer Discussion Group for Hereditary Colorectal Cancer in Ann Arbor, Michigan and was kind enough to share his tips for establishing your own group. Kevin recommends:
- Locating and talking to a genetic counselor about your interest in establishing a group
- Start by searching for genetic counselors through these directories:
- Identify local medical facilities or hospitals that treat Hereditary Colorectal Syndromes such as FAP and Lynch Syndrome. The above HCCF Provider Directory may be of assistance with this as well
- Talk with a local genetic counselor about identifying doctors who treat Hereditary Colorectal Syndromes to discuss with your interest of establishing a group
- Identify a meeting venue such as:
- Hospitals/Health Centers
- Community Centers
- Cancer Support Community
- Speak with the program director at the potential meeting venue about establishing a group at their facility
- Identify a possible facilitator for the group. Some venues may have requirements for the facilitator such as someone with a social work degree or special training
- Create a website or social media group for your group. An online Facebook group should be monitored regularly for appropriate contact and is suggested to be a closed group for privacy
- Once a venue has been secured, communicate the group's details to Hereditary Colorectal doctors, genetic counselors, local papers and radio stations, social media sites, etc
- Quarterly presentations of topics of interest are recommended such as topic experts including:
- Genetic Counselors
- Hereditary Colorectal Doctors
Kevin has generously offered his guidance in establishing your own support group if you would like to contact him via email or phone: 734-476-7425
If you establish your own support group, share it with Life's a Polyp to help promote your new support group!