Η Χρυσάνθη Ζούβα και ο  Θεοδόσης συμμετέχουν στο  RIDE ATAXIA-GLOBAL CHALLENGE 2021  και παρουσιάζουν τη  δράση του Ελληνικού Συλλόγου για την Αταξία του Φρίντιχ και τη ζωή των FA’es  στην ελληνική πραγματικότητα.

Explain how your country contributes to FA research and the FA community

The small FA community in Greece has recently grouped together to establish the Hellenic Friedreich’s Ataxia Association (HEFAA). Since the middle of 2020, our Association has been giving a voice to FA patients and their loved ones, so they can speak about their concerns (medical or other) regarding the disease, and we ensure they are being heard. Now HEFAA is one of the most active patient associations in Greece  and as its Vice-President, I feel extremely proud of what we have accomplished thus far.

We, the FAers in Greece, are trying to be an active part of the global FA community by participating in meetings for rare and neuromuscular diseases,  speaking out for FA, giving interviews, writing in social media and trying to educate and raise awareness about FA and rare diseases in general. We also help each other morally and financially when needed.

The main research in Greece right now, consists of the European program/database E-FACTS. We try to ensure that an annual assessment of all Greek FA-patients (adults and children) is conducted, in order to evaluate the progression of the disease. What is needed for the entry in the database, is an extensive neurological testing of each patient, that is being conducted only in Eginition Hospital of the University of Athens, a reference  hospital for FA that includes a Centre of Excellence for rare diseases in the greek capital.

Finally, we are immensely grateful to “MDA HELLAS”, a non-profit organization established in 2000 in Greece, whose goal is to holistically improve the life quality of people with neuromuscular diseases. It has three centers in some of the largest and most popular Greek cities. Each center includes medical structures, tools and staff that performs the necessary exams (cardiological, orthopediatric,etc) for FA patients, emphasizing in children.

Unfortunately, Greece does not produce many large-scale medical research projects focusing on FA, right now. However, we are lucky enough to have many medical experts and scientists who are interested in FA and want to develop projects concerning the disease. HEFAA is doing the utmost to assist those in development, as well as encourage new ones, being conceived just now. The whole FA Greek community welcomes any such projects.

• Tell us about your experience with mobility devices

At the beginning of my FA journey, after realising that I could not move completely on my own, I started using a walking stick. Later on, when that stopped working for me and I felt unsafe walking on my own, I started walking while holding onto one or two people. I preferred having friends and family provide support, rather than a rollator, because I was told that a rollator wasn’t the safest option for me at that point. For a couple of years now, I have been using a manual wheelchair and I find it comfortable,safe and challenging, but just enough.

• Tell us about your experience participating in any clinical trials or studies. Tell us why you find it important to take part in research

A significant problem for all Greek FA patients is that there are no clinical trials or studies taking place in our country. Accessing clinical trials is important for all patients because maybe they could improve their physical health, but also it would encourage them to keep fighting FA. A clinical trial participation can improve one’s morale, since they feel like their medical future is, in a way, in their hands. I would love to have the opportunity to participate in such a trial or study, since I think I am mature enough, both as a person and in my FA journey, to handle any tasks that may be required and any potential improvements – or lack thereof.

• Tell us about your diagnosis story.

 I have been living with Friedreich’s Ataxia for over 18 years now. I was diagnosed in 2003, at the age of 20, with the help of a genetic test.

The road to my diagnosis was not easy – quite like an ‘odysseia’, as the Greek rare disease community describes it. 

My first symptoms appeared at the age of 17, first with balance issues. For the first 3 to 4 years my balance was getting increasingly worse and my doctors couldn’t identify the root cause. I think that back then, knowledge about FA was limited -especially in my country- and they sincerely had no clue. So, my ophthalmologist, since he could find nothing wrong with me, suggested I go to a pathologist. The pathologist sent me to a psychiatrist. The psychiatrist recommended a different specialist to me. I got second and third opinions from doctors of pretty much every specialty under the sun. Fortunately, a doctor recommended a visit to a neurologist. Finally, after many years of my symptoms worsening while remaining unaddressed, the diagnosis came. 

I was quite young, almost college age, when I received my diagnosis, which came as a shock to me and my whole circle. It was such a rare disease – even most doctors did not seem to know of it. It seemed like the uphill battle was only getting started.

The hardships of my disease really get me down sometimes. Nevertheless, I still remember my mother telling me right after my diagnosis: “Chrysanthi, I promise, you’ll never be alone in this”.