- Years of suffering without a diagnosis - Many patients with rare conditions suffer for years with seemingly “unrelated” symptoms until an astute specialist finally puts the pieces together. In the meantime, many end up with multiple diagnoses, misdiagnoses, and are sometimes even told that it’s “all in their head.”
- Feelings of isolation - Many of these people feel alone. In part, the unpredictability of symptoms can make it hard to make plans in advance. Additionally, with only 1 in 100,000 people diagnosed with a rare condition, it’s no wonder that patients (and their families) often feel “nobody understands what I’m going through.”
- Self-education - Many patients conduct their own research to get answers. Often patients wind up knowing more about the disease than the average physician, and they are forced to take on the role of educating the healthcare professionals. These patients rely on a small group of medical experts, the Internet, and social networking sites for information, inspiration, and support.
- Patient associations - The combination of suffering, isolation, and the need for information acts as a catalyst for a patient or family member to start a support group. Often, the groups’ costs are defrayed by pharmaceutical companies who share an interest in successfully treating these patients and providing the support they need. The pharmaceutical companies can be instrumental in helping organize individuals and rallying them around their common interest.
Learn more about HAE at www.haea.org or www.allabouthae.com
Learn more about primary immunodeficiency at www.jmf.org or www.primaryimmune.org
Learn more about acromegaly at www.magicfoundation.org or www.pituitary.org