2017ForumIssue3

Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible Forum Cutaneous Lymphoma Foundation: Making sure each person with cutaneous lymphoma gets the best care possible Cutaneous Lymphoma Foundation PO Box 374 Birmingham, MI 48012-0374 telephone: (248) 644-9014 fax: (248) 644-9014 email: info@clfoundation.org www.clfoundation.org Forum is published by the Cutaneous Lymphoma Foundation. Editor: Hilary Romkey Layout & Design: Bridget Safadi Disclaimer The Cutaneous Lymphoma Foundation does not endorse any drugs, treatments or products reported in this newsletter. Information is provided for informational purposes only. Because the symptoms and severity of cutaneous lymphoma vary among individuals, the Cutaneous Lymphoma Foundation recommends that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation, treatment and medical care. www.clfoundation.org INSIDE THIS ISSUE From the President ............................ 2 From the Chief Executive Officer .... 3 My Experience with Cutaneous Lymphoma.......................... .............. 4 Farewell to Mike Silver....................... 5 Skincare Corner................................. 6 Upcoming Events............................... 7 Your Support....................................... 8 Cutaneous lymphoma is a rare diagnosis, and as such, necessitates being an advocate at the individual and the group level. As it pertains to your own healthcare, remember to ask important questions of your physician including: “How often do you see this disease?”, “How certain are you of the diagnosis?”, “Where can I go to seek a second opinion?”, and “What are my treatment options?” You should feel comfortable with your physician’s level of experience as well as their willingness to seek help of his or her colleagues. The cutaneous lymphoma world is relatively small and through patient organizations, such as the Cutaneous Lymphoma Foundation, and collaborative physician working groups, such as the United States Cutaneous Lymphoma Consortium, International Society for Cutaneous Lymphomas and others, we all work closely to provide high-quality care for patients. Both you and your physician should use these resources to identify the best place for consultation as well as care. There is no single formula for the management of rare and complex diseases. Depending upon your situation and geographic location, you may receive care at a single, multidisciplinary clinic or at your local dermatology or oncology office, with intermittent consultation at a comprehensive clinic. The most important factor is that you feel comfortable and satisfied with your care. As a patient, the rarity of cutaneous lymphoma provides a unique opportunity to raise awareness and to provide support. As I always tell my patients, “You will quickly become the expert.” Your emotional experience in being diagnosed, navigating the healthcare system, and undergoing treatment and follow up is unique. As a physician, I can provide a facsimile of your experience to a newly diagnosed cutaneous lymphoma patient; however, this is rarely as satisfying as actually meeting someone who has gone through the process. As a patient advocate, you are the most powerful voice. In today’s political climate, advocacy has many new connotations. As the director of the Mayo Clinic Multidisciplinary Cutaneous Lymphoma Clinic in Scottsdale, Arizona and the acting president of the Arizona Dermatology and Dermatologic Surgery Society, a group focused on state policy, patient well-being, and physician’s practice, I have a unique view on advocacy. Being an Advocate Aaron Mangold, MD, FAAD Mayo Clinic Scottsdale, AZ 2017 Issue 3 Be an Advocate...continued on page 5 As a patient, the rarity of cutaneous lymphoma provides a unique opportunity to raise awareness and to provide support.

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