Most doctors have never heard of Familial Dysautonomia (FD). While many doctors are open to learn from and collaborate with an FD family, there are some that do not listen. Unfortunately, when a doctor does not heed instructions provided by parents of an FD child, the doctor can put that child in medical jeopardy. A…
Did you know that most people with Familial Dysautonomia suffer from anemia? Anemia is defined as a low number of red blood cells. In a routine blood test, anemia is typically reported as decreased hemoglobin. Hemoglobin carries oxygen throughout the body. If hemoglobin is severely depleted, tissue and organs may not get enough oxygen. Symptoms…
Anyone planning to start a family dreams of a healthy baby, and will do anything to prevent passing on a serious genetic disease. Thirty years ago, when my husband Ken and I were envisioning our future family, we took the next step and spoke to the obstetrician about genetic testing. As both of us are…
If you’ve had a corneal abrasion, you know how painful it is. If left untreated, a corneal abrasion can cause permanent scarring, impaired vision and even blindness. In people with Familial Dysautonomia, pain sensation is absent, which, at first blush, seems like a godsend. However, pain is really a positive because it acts as a…
If you’re up to date on the FD NOW blog posts, you’ve had a glimpse at PTSD from an FD patient’s perspective as well as an FD parent’s perspective. There are all sorts of environmental, emotional, and physical triggers that can cause stress and anxiety. I have certainly experienced trauma, triggers, and post-traumatic stress coping…
In the world of Familial Dysautonomia, what is a crisis and what causes crises? Like most disorders, FD has its own unique vocabulary describing its characteristics. For example, migraine sufferers experience “auras.” Epileptic patients have “seizures.” Those with FD endure “crises.” There are many textbook synonyms for crises including vomiting attacks, hypertensive crises, and autonomic…
In a previous blog article, we explored what it’s like for someone with FD to deal with PTSD, also known as post-traumatic stress disorder. This article explores PTSD from the FD parent perspective. Just to review, PTSD often occurs with military veterans. On the battlefield as soldiers, they suffer great trauma, dodging enemy bullets that…
With sadness, we learned of the passing of 26-year old Daniel Harris of the United Kingdom, who died in early October 2019 from complications of Familial Dysautonomia. To honor Daniel’s life, we are sharing portions of his Mum’s eulogy, with her blessing. Our hearts are with Daniel’s family, parents Sue and Stuart, and sister, Jessica. …
“We just found out that we are pregnant, and the fetus has familial dysautonomia. Should we have an abortion?” As both the president of FD NOW and as a mom of a young adult with FD, I’m asked this question every so often. Each time it is heartrending. The conversation usually beings something like this,…
Most of us probably associate PTSD, post-traumatic stress disorder, with veterans. The classic example occurs when soldiers returns from war. Back on the battlefield, they suffered great trauma, dodging enemy bullets that could take their life at any time. In civilian life, when they hear a car backfire, they are instantly reminded of the gunshots…
Welcome to the Familial Dysautonomia NOW Foundation blog! Whether you are in the FD community, the medical field or are a donor, this blog is for you. Each month, we’ll talk about various topics including treatments, daily life, and research updates. Raising a child with familial dysautonomia is challenging. There’s host of medical issues to…