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…
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…
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…
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…
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…
There are new treatments in the works for those suffering from Familial Dysautonomia! Drs. Rubin and Anderson, co-directors of the Research Laboratory for Familial Dysautonomia at Fordham University, New York, USA announced the good news. “We are working on a novel and natural, commonly-consumed, chemical compound that will provide those with Familial Dysautonomia even greater…
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,…
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…
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…
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…
You may have seen mass media advertisements for prescription drugs called “MAO inhibitors” also known as “MAOI’s”. These drugs are often prescribed to treat people with depression. Taking MAOI drugs can be dangerous because they significantly lower or “inhibit” your monoamine oxidase A enzyme, abbreviated MAO-A. MAO-A is a critical enzyme. MAO-A acts like a…
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…
Every year, the New York Midreshet Shalhevet FITNESS Team hosts a girls’ night out to benefit FD NOW! Put on your comfy clothes and sneakers for a dance party fitness event with over 150 women and teens. This lively workout raises over $9,000. Raffles, refreshments and fun!
Every March, over 1000 people log on to browse, shop, and vie for over 150 fun, functional and trendy auction items. The bidding categories include jazzy jewelry, timeless toys, fantastic fine dining, state-of-the-art electronics, marvelous memorabilia, spectacular sporting events, practical gift cards, unique fine art and cool collectibles. Also featured are two spectacular properties. The first…
Spearheaded by Carol U. Alterman, Florida Regional Representative of FD NOW, the FD NOW 5K Run/Walk for a Cure attracts over 200 runners. This South Florida event raises over $30,000 to benefit the Laboratory for Familial Dysautonomia Research at Fordham University in New York. 2014 – Eric Crosses the Finish Line 2014 – Eric Hugs…
In spring, donors gather together in NY to benefit FD NOW. The event attracts over 200 dinner guests and raises over $100,000. The fundraiser memorializes David Z. Herman, whose granddaughter is afflicted with FD. At dinner, Drs. Rubin and Anderson presents an update from the Laboratory for Familial Dysautonomia Research at Fordham University in New…
Periodically, FD NOW features various experts to address specific needs of the FD community, affiliates, and donors. Prior events include The Gene Scene, where FD NOW partnered with the Jewish Genetic Disease Consortium (JGDC) and JScreen. This event outlined the most up-to-date information on genetic testing for FD and other genetic diseases. A renowned…