Discount Medical Supplies proudly salutes The Global Genes Project, a major not for profit advocacy organization that specializes in rare and genetic diseases. The definition of the word rare has always had a negative connotation, usually equated with the concepts of weird and unusual. Rare is the exception rather than the norm, rare is the minority, rare is different and as such misunderstood and feared. However, as the Global Genes Project’s official website puts it, rare is everywhere. One in every 10 Americans are affected by rare and genetic diseases; that’s 30 million people in the United States alone, and 300 million more all over the world.
Recently, Discount Medical Supplies' very own Dr. Jon Segal (sporting a Support the Genes ribbon) made another appearance on the popular Lifetime morning show The Balancing Act. This is important for two reasons. First of all, The Balancing Act
has been kind enough to offer the Global Genes Project an opportunity to spread their message, especially as World Rare Disease Day approaches (February 28th). Moreover, they also allowed Dr. Segal to let viewers know that our customers at Discount Medical Supply are able to make a donation to the Global Genes project whenever they place an order. Additionally, doctor, father, businessman, caregiver and our fearless leader also spoke of the challenges of care giving and how a positive attitude is essential to overcome those challenges.
Why is it so important to know about rare and genetic disease, and support the organizations that devote their time and resources to them? One very good reason is that, according to the National Institutes of Health, approximately 50% of the people affected by the more than 7,000 existing rare diseases are children. Furthermore, about 80% of these diseases are caused by faulty genes. Sadly, the genes of the father shall be visited upon the son. Nonetheless, they don’t cover only genetic diseases.
For example, Global Genes also focuses on non-24-hour sleep-wake disorder. This chronic circadian rhythm sleep condition afflicts up to 70% of all blind people, and although it can also affect sighted people, fewer than 100 such cases have been reported as of 2005. Symptoms include cognitive dysfunction; confusion; diarrhea; extreme nausea and fatigue; hair loss; headaches; ideational, ideomotor apraxia, kinetic, verbal and limb apraxia; impaired balance; joint pain; loss of muscle coordination; menstrual irregularities; muscle pain; suicidal thoughts; and weight gain. If all of that sounds bad for someone who can actually see, just imagine how it is like for someone who is destitute of vision.
Discount Medical Supplies, Global Genes, and many other organizations around the world will be celebrating Rare Disease Day
, a chance to support the people who suffer from non-24-hour sleep-wake disorder and any other rare disease, and of course the people who provide care for them. There will be related events taking place all over the U.S.A., as well as in countries such as Mexico, Argentina, France, Costa Rica, Panama, the United Kingdom, Japan, India, China, Iran, Italy, Egypt, Germany, Canada, the Netherlands, Sweden, Spain, and many others. This is truly an occasion to forget about borders.
Remember that you can support Global Genes every day of the year through Discount Medical Supplies. Keep in mind that our charity program is completely optional; it’s up to you to make a difference. Paraphrasing Dr. Segal on The Balancing Act, you have to wake up every day telling yourself that you can make a difference. And on Rare Disease Day, don’t be the one who doesn’t want to wear the ribbon; wear that you care.
Related Read: Dr. Jon Segal discusses Caregiver Stress at the Balancing Act