In the early 90s, Britt Johnson‘s life was like that of any healthy young girl. Until suddenly, it wasn’t. In the summer of 1992, Britt came down with strep throat for the first of what would be many times. Over the next several months, Britt encountered one health setback after another. Months of health setbacks turned into years, during which time Britt had repeated contact with the healthcare system. This contact was not always positive. Britt received a series of misdiagnoses and was even accused of being a hypochondriac. Finally, at the age of 20 Britt was diagnosed with Psoriatic Arthritis. Britt’s disease has continued to progress, and her diagnosis has been amended to Spondyloarthropathy and Rheumatoid Arthritis.
Our most rare or unique qualities can often be our greatest strengths, but when it comes to disease, rarity is a tremendous challenge. A rare disease, also known as an orphan disease, is any disease that affects a small percentage of people. In the United States, a disease is considered rare if it affects fewer than 200,000 people at any given time. According to the National Institutes of Health (NIH), there are more than 6,800 rare diseases. Though each of these diseases are rare, having a rare disease of some sort is not. Approximately 30 million Americans, or almost one in every 10 people, suffer from a rare disease.
Living With a Rare Disease
The numbers cited above are interesting, but they don’t tell the whole story. The rest of the story relates to the daily struggles of rare disease patients and their support networks. Rare disease symptoms vary even among patients suffering from the same disease. This symptom variability, combined with lack of scientific understanding and awareness, can lead to delayed diagnosis and difficulty accessing treatment. Patient quality of life is severely affected by the “loss of autonomy due to the chronic, progressive, degenerative, and frequently life-threatening aspects of the disease.”
The following blog post is by Jeri Burtchell.
Jeri is a renowned patient advocate, with first-hand experience participating in clinical trials. Her ideas, passion and willingness to share via her blog and in speaking engagements help to clarify how clinical research works, its value, and where there needs to be further focus on the needs of the patient.
The opinions expressed by Jeri are her own, and do not necessarily reflect those of the Lilly COI Team.
In mid 2007 I laid on my back staring at the ceiling, trying to talk myself out of suicide. After eight years of battling multiple sclerosis I was sure there was no hope of ever seeing an improvement in my quality of life. The thought of my family’s certain sorrow over my tragic death forced me to find an alternative. I pushed myself to make one last effort at self-advocacy and hopefully change my life. I was ready to entertain drastic measures.
Allow me to introduce myself. My name is Jeri Burtchell, but from 2007 until 2011 I was also known as Subject #0008. More…
So what’s a Twitter Chat?
Juliet Barbara, social media commentator for Forbes, shares in her article “How Twitter Chats Will Open Your Mind and Network:”
…Twitter chats are Twitter-based dialogues that anyone can join just by following and mentioning whatever hashtag is assigned to that chat. Because of the diverse group of people a Twitter chat can bring together in an open, “liquid” environment, there’s potential for those serendipitous connections that just may complete an idea.
The Partnership with Patients Summit was an event focused on assuring the patient is at the center of healthcare policy, care and R&D. I was fortunate to attend, and while there met several patients and advocates who use Twitter chats to connect on disease and health. I learned quite a bit about why patients Twitter chat, and I couldn’t help but wonder if there’s not an opportunity for those involved in drug development to learn from these social media mavens.