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 of anemia, like paleness and fatigue, happen because organs are not getting what they need to function.   Our son, Andrew, a young adult with FD, struggles with anemia. For example, he needs several rests while walking through a big box store. Of ..read more

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 of Ashkenazi (Eastern European) decent, we knew we had a risk of having a baby with Tay Sachs, a devastating disease. We were relieved when our bloodwork was negative, but little did anyone know at that time that there was another genetic disease, Familial Dysautonomia (FD), which also affects ..read more

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 siren, alerting our body that something needs attention. So, what happens when someone with FD gets a corneal abrasion and those pain sirens are incapable of blaring?  How do you seek treatment if you aren’t even aware you are having a med ..read more

A long-standing treatment for Familial Dysautonomia has been safely relabeled under a different company name.  Green Tea-70, originally produced by the company Food Science of Vermont, is now Green Tea-70 now produced by DaVinci Labs. DaVinci’s formulation is identical to the Food Science of Vermont’s version; both contain the same top-quality amount of a key ingredient, Epigallo-catechin-3-gallate (EGCG), which greatly helps those with FD.  More importantly, Drs. Rubin and Anderson, who first discovered EGCG in 2003 and then vetted the original formulation, has meticulously evaluat ..read more

A New York Familial Dysautonomia parent (wanting to remain anonymous) is reporting that their child, under the age of 20 years, tested positive for COVID-19, and is OK. Their child has some prior lung complications, common with FD patients. This child strictly follows the FD treatment protocols discovered by the FD Research Laboratory at Fordham University, NY. The child’s symptoms were a low-grade fever for two days, feeling lethargic and weak, slight dizziness, slight chest pain, and loss of taste and smell. Oxygen saturations were consistently above 95 throughout. Symptoms lasted six days ..read more

Due to the COVID-19 pandemic, the world will be a different place by the time I finish writing this blog post.  Everything is changing before our very eyes on a minute to minute basis.  We are in a tornado of news; at this singular moment, March 20th 2020 at 4:00pm CST, the top news stories is that China’s death toll is over 3,000, Italy’s death from COVID-19 has now surpassed China’s, and Illinois has joined New York and California’s stay at home order. Tomorrow, we will be deluged by even more alarming headlines. The elderly and the medically fragile are especially vulnerable to COVID-19, a ..read more

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 mechanisms that developed from my experience of having a sibling with Familial Dysautonomia. My brother Andrew was in and out of the hospital so many times while I was growing up. Sometimes he was in the hospital for as short as two or three nights, and sometimes mo ..read more

Recent news reports indicate that Zantac contains a very small amount of a carcinogen called NDMA.  After spending several hours trying to learn more about the risks associated with the ingestion of NDMA, I am finding that the information currently available provides no clear answers. There is no question in my mind that Zantac (and perhaps all sources of ranitidine, the generic form of Zantac, available on the market) is contaminated with NDMA. The amount present is apparently very small, but the risks of ingesting this every day over a long period of time are impossible to assess. Not taking ..read more

In 2005, the Familial Dysautonomia NOW researchers made a huge treatment breakthrough!  They discovered that those with familial dysautonomia (FD) must avoid tyramine, a natural substance found in aged foods, such as hot dogs, prunes and soy sauce.   Avoiding tyramine is crucial for those with FD.  When tyramine floods the system, the FD body is ill-equipped to wash it away, causing a potentially fatal attack.  Our son, and many others with familial dysautonomia, has experienced these physical attacks due to inadvertent tyramine intake. Avoiding tyramine is tricky.  It does not appear on a fo ..read more

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 manage, disability laws to learn and governmental benefits to navigate. Often, I’m asked, “How do you do it?” I have only one answer. “Love.” Our son’s physical body has taken a beating over the years from FD. He is unstable on his feet, suffers from dizz ..read more