Carolyn Fota approached the IPPF last fall about starting a support group in her area. Her reason for wanting to start a support group was simple. “I feel so much was given to me through the IPPF — it’s the least that I can do. This illness that we share, although serious, doesn’t have to be so isolating, scary and painful especially with a wonderful organization like the IPPF.”
Carolyn and Kevin Kruetner, a patient from her area, were the driving forces behind this meeting. They worked together with the IPPF to make sure this meeting would be a success and a way for them and other Washington, DC, area patients to come together to provide mutual support.
The IPPF is a great organization with highly trained and wonderful people who can help you and your family.
The group started their meeting over a lunch of pizza and pasta. Afterward, Vicky Starr, RN, from Diplomat gave an overview of the various medications, therapies, and treatment options used in treating PV, MMP, and BP. She also provided an update on insurance by state and where the (national) legislation was going as far as the rare disease community is concerned.
She also provided attendees with advice on being good self-advocates, strengthening communication skills, managing stress, and developing good relationships with care communities (dermatologists, internists, medical doctors, dentists, periodontics, IVIG care team, etc.).
She stressed the importance of being involved with the IPPF: “The IPPF is a great organization with highly trained and wonderful people who can help you and your family.” She highly recommended being involved with a support group and attending the yearly conference.
Vicky also took individual questions and spent time with participants who were relatively new to PV/MMP and BP. She did a great job making all feel at ease. No question was too small.
Attendee Mimi Levich agrees that this support group got off to a great start. “It was nice to meet everyone and share our stories and advice. Listening to Vicki Starr was especially exciting. She had some great suggestions and talked to us as equals, which is a rare for a medical professional.”
The IPPF thanks Carolyn Fota and Kevin Kruetner for bringing this support group to life. The duo has already started to plan their next meeting. Please keep an eye on the IPPF events page for more support group meetings around the country.