One of the ways MAC can be most helpful to members is through collaboration. Working together conserves our energy and resources, provides us with the sense that we are not working alone, and plugs us in to a nationwide network of passionate melanoma advocates and experts. MAC members are already collaborating in a multitude of ways:
One particular recent example of collaboration stands out to me. Maggie Biggane of The Mollie Biggane Melanoma Foundation in New York received an e-mail message through the foundation’s website from a concerned spouse/caregiver in Illinois. Kathleen was worried that her 89 year-old husband, who is bed-ridden, might have a form of skin cancer on his forehead. “He has had small lesions for over a year that have combined to the size of half a dollar and bleed when touched,” she wrote. Although the couple has Medicare, Kathleen could not physically get her husband in to a doctor’s office to be seen and using an ambulance was prohibitively expensive. She recalled that even when her husband was a hospital inpatient the doctors did not offer a dermatology consult. She believed that the doctors “have written my husband off as an old, chronically ill man not worthy of care.” Since Maggie is in New York she forwarded the message to me at Skin of Steel in Illinois. I wrote to other local MAC members for help locating someone near Kathleen in Oak Park, IL. Kathleen expressed frustration and desperation that made us want to find a dermatologist who would make a house call. Very quickly, we had offers to review photos of the lesion, and then a medical student at Loyola forwarded our request to her attending, who actually made the house call. It turned out that the dermatologist lives just a few blocks from the patient. Writing to Maggie about the doctor’s visit, Kathleen said, "He actually walked over to visit Charles on Friday. What is astounding and seems like magic is that, in order for me to find a dermatologist who is willing to visit my husband at home and who lives only minutes away from us, it was necessary for me to contact you in New York from here in Illinois. I do not believe that I would have found Dr. Eilers without your kind intervention since he works at the VA Hospital at some distance from our home. It helps so much that I am no longer carrying the fear of my husband's possible cancer alone. Thank you!” Without the member network that MAC has created, Kathleen might never have found the help she needed. As we move forward we want to strengthen these ties, so that everyone who reaches out to one of our members is reaching out to us all. Katherine Byrnes Executive Director Skin of Steel Skin of Steel’s mission is to provoke revolutionary personal, behavioral and institutional change in dealing with melanoma. Skin of Steel is partnering with Aim at Melanoma to launch the first national, collaborative melanoma tissue bank that will provide researchers with fresh-frozen samples of primary tumor tissue that preserves RNA and DNA. These samples will be collected at four medical research institutions across the U.S. with the aim of providing more effective personalized diagnostics, preemptive treatment, and targeted therapies. http://skinofsteel.org
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AuthorThese entries are the collective work of MAC members. Archives
September 2018
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