Rare Disease Awareness

EDS is a rare genetic disease affecting the collagen production in the body. The trademark of the disease is hypermobility of joints, but it may also manifest as smooth muscle dysfunction including digestive, vascular, skin, and nerve problems. It is suspected this disease is majorly underdiagnosed in part because many of those with mild expressions go on to become professional athletes and dancers and in part due to the difficulty diagnosing a condition most physicians have never seen. As one of the “invisible” diseases, those with EDS often feel unsupported or unbelieved by their support circles and medical teams. While spreading awareness may help the frustration, there is no cure, and the best treatment is self-care and practicing patience coated with effective communication skills. Stay strong!

Though very little is understood about POTS, the effects can be wide-ranging and devastating. This disease appears to be a malfunction of the autonomic nerves which regulate the heart rate and blood flow dynamics when we go from sitting to standing. Though symptoms range, severe cases cause debilitating vertigo, lightheadedness, and fainting. Due to the unpredictability of these symptoms, it is not uncommon for those with POTS to have difficulty with driving, walking, and physical activities. There are a few care strategies for this disease including specific exercise programs, increasing salt intake, and occasionally medication to regulate the heart rate. However, these options may be complicated by associated diseases so having a good support circle and connection with a medical team is instrumental in addressing the condition.