"You have nothing to fear in life. All you need is to understand." - Marie Curie

There are stories, seemingly so private and not shareable, but at some point you feel it's time to tell them out loud. And the record of this story is the record of my personal truth. Despite the fact that I am scared because it forces me out of the embrace of intimacy, I am willing to share it because I believe that my story can perhaps help or offer comfort to someone who is in a similar situation to the one I experienced first-hand after my hip surgery.

In 2016, I underwent a periacetabular osteotomy of the hip, which is considered one of the most technically demanding and risky surgical procedures in orthopaedics, and I still feel its severe effects today. After the operation, I could no longer actively lift my leg, and walking without crutches was practically impossible, as my upper torso tilted sharply to the right side with every step. There was also daily pain and tingling in the hip area. The doctors reassured me that, due to the complexity of the surgery, the recovery would be longer and that rehabilitation would restore normal function to my leg.

Months pass and turn into years of intensive rehabilitation, but my condition remains unchanged. I am tirelessly searching for answers, consulting various specialists and undergoing various tests to discover the cause and a potential path to a cure. But the result and the doctors' answer is always the same: "We have not had a case like this before , so we are not in a position to suggest an appropriate therapeutic solution."

Suddenly, I am losing life in my life... The disease has unexpectedly shaken my whole world and thus changed the quality of my life. I have no choice but to develop coping mechanisms. I find hope in my own struggle, perseverance, strength and the support of my family.

"We have exhausted all treatment options in Slovenia." When I heard these words, I just hoped and fought not to break... Everything inside me screamed that this could not be the end... That I had too much life ahead of me and that I could not live it in pain and on crutches. What are the alternative paths for me, what else can we do? I suggest to the doctor who operated on me the possibility of treatment abroad. He agrees, prepares all the necessary documentation and obtains a date at a renowned orthopaedic clinic in Switzerland.

Treatment abroad - my last hope

The beginning of the story in Switzerland also heralds the beginning of the story of the right treatment. After many tests and thorough neurological treatments, during which I feel for the first time in a long time heard and understood again by the health professionals, I finally receive an official diagnosis. Functional neurological motor disorder. "This isthe first time I have heard of this disorder. Is it treatable?" The doctor politely explains that it is the second most common condition treated in their neurology department in Bern and gives me hope that, despite the years lost since the surgery, there is still a chance of a cure. The mechanisms that cause FND are still poorly understood, and new scientific findings are influencing how patients are diagnosed and treated.

Slowly, step by step, during my treatment abroad, I am realising that there is still a way for FND not to take control of my life. This way lies within me and in the realisation that I can still manage the disorder, whic has been triggered by the hip surgery.

During intensive treatment in Switzerland, which includes neurological treatments together with a specialised physiotherapy programme for functional neurological disorders, I manage to take my first small steps without crutches. Everyone was teary-eyed and I am grateful to each and every one of them. As I write this story, seven months have passed since my last follow-up with Dr Barth. Seven months of daily training... I am making progress month by month and I know that I am no longer far from my goal. I know that the symptoms of FND will be there in the background for a while, but for me it is more important that I have learned to manage them.

The failure of my treatment in Slovenia has taken a lot of years, strength and energy and has reduced my quality of life, so my daughter Tanja and I felt that we had to speak out and start raising awareness among the general and professional public in Slovenia, as FND is still relatively unknown and misunderstood here. A cure is possible if we are persistent, patient and have faith in the diagnosis. Hope is always followed by trust, and I would like this website to create a safe space to seek scientifically based information and to encourage an active and respectful dialogue.

FND requires specific professional treatment and management. Let this story and this website, which has been entirely designed by my daughter Tanja, also be a kind invitation to all doctors, neurologists, physiotherapists, psychologists and all other health professionals who can help in any way to alleviate the symptoms FND, to read the material and thus enable faster and more effective treatment for other patients. 

At this point, I would like to say thank you:

To my loving family for all the support and help

You were and still are my shoulder to lean on when my illness testes me the most.

To the doctor who operated on me

Thank you for your cooperation and all your help in finding a solution in the first years of treatment. Thank you for opening the way for me to go abroad.

To my personal doctor

I can confirm that you have carried out your mission with distinction, because you have been able to hear and understand me. There are no words to thank you enough for all you have done for me.

My doctor and physiotherapist in Switzerland 

To neurologist Dr Rike Barth and physiotherapist Kevin Marcus - a word of thanks is not enough for all the professionalism, warmth and sincere desire to help that you have so selflessly shown me. Together, with tears in our eyes, we took the first steps that I had been so anxiously awaiting all these lost years of treatment. I could not have done it without your help. Your hard work, commitment and dedication inspired the creation of this website.

Treating FND is a journey - long or short, but whatever the length, it leads to the destination. Trust in the journey, and above all, trust in the people who will do their best to help you.

Marjetka