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February 14, 2001

The Internet and Medicine: Building a Community for Patients With Rare Diseases

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JAMA. 2001;285(6):805. doi:10.1001/jama.285.6.805-JMS0214-2-1

The evolution of the Internet has transformed the definition of community for the patient with a rare disease. With the availability of Web pages, bulletin board services, chat rooms, forums, webcams, electronic mailings, video and audio clips, patients with rare diseases finally have a medium to voice their feelings of alienation, bewilderment, and apprehension. They are no longer limited to communicating via traditional face-to-face meetings, telephone, and mail services. With the Internet, members of this neglected and vulnerable population have at their fingertips the tools necessary to relieve fears and answer questions about their specific disease.

In 1993, I became a member of the rare-disease community when I was diagnosed with Takayasu arteritis after 2 triple-vessel heart bypass operations. Takayasu arteritis is a rare, chronic, inflammatory disease primarily of the aorta and its branches. The subclavian, renal, carotid, and the ascending aorta arteries can also be involved. Takayasu arteritis affects more females than males and usually begins in the second or third decade of life.1 It is common for patients to exhibit absent pulses, vascular bruits, and symptoms of arterial involvement. This unusual disease has an incidence of 1.2 to 2.6 per million per year worldwide and is more common in Asian populations.1 There can be varying presentations of symptoms and often delays in diagnosis due to the erratic course of the disease.

While I was recuperating from my second operation, I realized that education, patient advocacy, research, and support were either inadequate, neglected, or outdated. I decided to form a nonprofit, tax-exempt, public charity, the Takayasu's Arteritis Association (TAA), to establish a community for patients with Takayasu arteritis, as well as family members, health professionals, and the general public.2 While developing my association's goals and objectives, it became clear that the Internet would be an immensely powerful and vital tool for communication and education. The Internet has addressed my unique needs as a patient with Takayasu arteritis and as a president of a charitable organization. As a patient, I have enjoyed its convenience and accessibility as well as the diverse opportunities it provides for interpersonal communication, empowerment, and validation. As the president of the TAA, I have used the Internet to disseminate accurate and current health information and to advocate patient empowerment.

The fundamental advantage offered by the Internet is its ability to seamlessly connect information dispersed across time zones and continents. The small and geographically scattered population of patients with Takayasu arteritis has in the Internet a central place for interaction and education. The medium addresses many patients' factual questions and psychological concerns. Due to the complexities of the disease, it is common for patients to see many specialists, who often have diverse opinions in diagnosis and treatment. This makes it especially critical for patients to have trustworthy and reliable Internet sites to help them clarify uncertainties and misinformation. In addition, the mounting pressures and demands on the time of health professionals, often leaves communication gaps between physician and patient. Support groups for patients with rare diseases must therefore compensate for this lack of education and support services. In filling these gaps in patient care, Web sites can serve as valuable channels of communication. Through Web sites that focus on rare diseases, complex information conveyed to patients by their physicians can be explained in simpler, more understandable terms. At the same time, the Web sites serve as lively forums for discussion about the needs and activities of the community of patients with rare diseases.

With all of the fanfare surrounding the power and potential of the Internet, it may present some pitfalls for the rare-disease community. Issues of cost, privacy, and fraudulency need constant attention. Rare-disease communities may be discounted unless they continue to fight for regulations and legislation that will make the Internet accessible and affordable. For example, the introduction of high-speed cable and phone-line connections should not restrict access of the financially burdened patients to extensive library files, the latest research, or other online resources.

According to an old adage, "Man loves company even if only that of a small burning candle."3 The process of exchanging ideas via the Internet can be therapeutic for people with rare diseases. Practical ideas as well as emotional support emerge from Internet discussions among members of rare-disease communities, since by comparing treatment courses, patients may get ideas for their own treatment. The Internet has already helped to create important new communities for patients with rare diseases, the medical community, and the general public. By using the Internet, many more rare-disease communities will be able to share experiences, resources, ideas, coping skills, helpful hints, financial support, and hope. In combination, these efforts will guarantee the success of our missions and contribute to the growth of a truly new form of community.

Isselbacher  EMEagle  KADe Sanctis  RW Diseases of the aorta. Braunwald  Eed.Heart: A Textbook of Cardiovascular Medicine New York, NY WB Saunders Co1997;1546- 1581
Not Available, Not Available http://www.takayasus.com. Accessed October 28, 2000
Lichtenburg  GC In: Ehrlich E, De Bruhl M, compilers. The International Thesaurus of Quotations. New York, NY Harper Collins Publishers Inc1996;102