Scleroderma - PDF Document

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  1. Scleroderma Mary Beth Bobik-Kadylak Director of Patient Education & Support Scleroderma Foundation, Tri-State Chapter mbbkadylak@sclerodermatristate.org

  2. Scleroderma Overview • Genetic, not hereditary • Needs a triggering event to set the wheels in motion • This disease is complex - categorized now as autoimmune disease or connective tissue disease or rheumatological disease • Can affect anyone at any age • Women vs men: 4:1 – childbearing years • Often progressive, debilitating, life threatening • No known cause or cure

  3. Scleroderma SCLERODERMA 300,000 200,000 100,000 Localized Systemic Sclerosis May be combined Morphea Usually children Linear Diffuse Limited Head Limbs (en coup de sabre) Overlapping Syndrome Sine

  4. Areas of Unmet Need • Disease Awareness – how to provide awareness of the thousands of Rare and / or Autoimmune Diseases? • Disease Education – to empower patients and families AND educate physicians and all variety of health care professionals • Support for Patients and Families • Participation in Research

  5. Disease Awareness • Our goal each year is to promote awareness of Scleroderma so those affected by this disease will know where to turn for help. • We provide awareness through our Stepping Out to Cure Scleroderma Walks (Hartford on 6/10/2018) • We have volunteers who promote our organization and the resources we provide at any appropriate health fairs that we can find to participate in.

  6. Disease Education •Through our support groups (3 in CT) •Through education programs – Yale and UConn •Online videos at: SclerodermaVideo.com or through our lending library which also includes many print articles and books – listed online at sclerodermatristate.org •Creating opportunities for physicians and med students, nursing students etc. to learn about the disease.

  7. Support for Patients/Families • In CT with a pop of about 3.6 million – potentially have at least 3600 individuals with scleroderma. • CT has only 2 centers designated as treatment centers –Health & Yale – many patients will go to MA or NY for treatment. UConn • We serve NYS, CT and Northern NJ – estimated patient population – 30,000 • Partner this with the total US population with rare diseases, the job of finding ways to support individuals is a task that seems nearly impossible – however once you have the programs in place and a process that we can refer patients to with the resources they need – it can by done.

  8. Research 86% of the nation’s $2.7 trillion annual health care expenditures are for people with chronic health conditions $2,300,000,000, 000 I

  9. Support for HR4638 • H.R.4638 - National Commission on Scleroderma and Fibrotic Diseases Act of 2017

  10. Contact Information Mary Beth Bobik-Kadylak 800-867-0885 mbbkadylak@sclerodermatristate.org Sclerodermatristate.org