A Twist of Fate-ATS

“Our mission is a world wide initiative to find a cure for arterial tortuosity syndrome, by supporting research, education, awareness, and families.”

---

A Twist of Fate-ATS (ATOF) was founded to find a “cure” for arterial tortuosity syndrome (ATS). Andrea Tayl0r’s youngest son was diagnosed, with ATS, at the age of two. Her son has had 3 heart catherizations, several balloons, three stent stents in the pulmonary arteries, and open chested surgery to reconstruct his pulmonary artery. He is the first ATS patient in the United States to have had this procedure done and the first patient in the U.S. to have a proceedure called corneal crosslinking, to help stop the degeneration of his cornea. It wasn’t until 2014, when Andrea’s son had a life threatening pneumonia type illness and was treated at a neighboring states children’s hospital. They would not listen to Andrea and there was very littel information on line about ATS at the time. She even took her son’s binder of medical records to the hospital in hopes that she could convence them that they were causing him more harm then helping. They ended up causing one of his lungs to collapse and were wanting to place him in PICU and on a ventilator. That is when she stood up and said, ” No more!” The very next morning her son’s care team at their home hospital sent the AngelOne jet to pick him up and take him back to Arkansas Children’s Hospital. As soon as they got off the elevator, his cardiologist, Dr. Eudince Fontenot was waiting for them and assured them that they had this under control. They were right, they knew just how to care for her son’s condition and this is what ultimetly led to the start of A Twist of Fate-ATS. Andrea knew that she could not let this happen to another family or patient with ATS.

“I can’t explain with words what it is like to hear physicians say they don’t know what your son has, what his prognosis is, or even what the next step is; other than his heart is enlarged due to the increased pressure and if they don’t do something soon, he won’t be stable for long, “ said Andrea Taylor, during an interview when discussing the early year of her son’s diagnosis. She is always researching trying to find latest information written on ATS, and conversing with doctors from all over the world. In March of 2014, 3 new ATS families contact her, about a week a part. This was extraordinary news considering the first gentleman that contacted her was an 18 year old and then another person, was a 33 year old woman. It became quickly obvious that we needed an official patient group and if we wanted more research, more information, and to save our children and new friends that the next step was to form a nonprofit.

We have been able to assist the older gentleman with his primary diagnosis, the younger man has had full body scans for the last several years, which will provide a plethora of information to the medical community, and the young woman was not diagnosed until her pregnancy, giving all the families with young female children with ATS, great hope for their future.

A Twist of Fate-ATS is a 501c3 nonprofit and is the only international patient group for ATS.

Briging the Gap: arterial tortuosity syndrome was a once in a life time opportunity to tell the story of how the gene was descovered in Ghent, Belgium. How what the scientists were doing in the lab, lead to meeting Andrea Taylor of A Twist of Fate-ATS and the landscape forever changed with this inital partnership, for those with ATS. While there is still alot unknown about ATS, we have been able to establish guidelines, which you will find on the ATS Education page. There are surgical interventions that have worked well for patients with ATS. While ATOF is bringing information about ATS, we are not medical providers. What you read or watch on the ATOF website is for educational purposes only and you should always reach out to a medical provider to voice any concerns you have about ATS.