A Chat with Luciana…

“Hello everyone, my name is Luciana and I am an FOP sufferer, living in the North West of England. As a little bit off an introduction, I was diagnosed with FOP at the age of 2, in 2000 by Professor F. Kaplan as he came over to the UK for a visit to Scotland to meet with another consultant specialising in paediatric care at the time. Since my diagnosis, my parents have always been very positive and have never held me back with regards to my condition, of course we know there are things that I could not do, but generally speaking I have led a life where I have tried to be as ‘normal’ as possible. I’m not keen on using the word ‘normal’ as we are still normal but in our own way.

I am now 25, and have gone through mainstream primary school, high school (with 1:1 support where needed) and then went onto studying A-Level’s at Sixth Form College which then resulted in me getting an Apprenticeship after completion of my A-Levels at local recruitment firm where I achieved a Level 3 Apprenticeship in Business Administration.

Throughout my life, as we all have, there has been some highs and lows which particularly stood out during lockdown with Covid-19. As we were advised to shield, I was then also working from home which unfortunately combined with the two, resulted in quite a low period of my life for around 6 months whereby I struggled with a low mood and anxiety. However, due to my strong mindset, I took the right decision and referred myself for CBT (Cognitive Behavioural Therapy) which was provided on the NHS and was presented by a specialist therapist who had extra knowledge and understandings of people with chronic illnesses. As I am sure you are aware, whether you’re a sufferer yourself reading this, a family member or friend to a sufferer, living with FOP can have its affects onto both our physical and mental health. Nevertheless, despite me looking back at that time as a ‘dark place’ I often sit and reflect on that time and look at it as a positive as I have grown and developed as a result of going through that period and have a much better lookout on life and also life with FOP.

Since August 2021, I have been working for the NHS myself in a clerical role at my local Healthcentre. I work within the treatment room and podiatry department assisting patients with booking of their appointments, administration duties and other clerical tasks. I love my job and find it very rewarding to help with the local community and national health service as I have an empathetic and understanding personality and the role plays to my key strengths. I am starting a leadership and management course in September through work which I am keen to get started with as I would love to progress into a secretarial or PA / Team Leader role within the NHS.

Alongside working, I am always keen to help out and get involved with the FOP community and have done some voluntary work for both the IFOPA with some advocacy and guest speaking work at their virtual conference and also participated with Chris and Oliver at the Ipsen Town Hal Event in 2022 down at their head office in Slough. That was such a rewarding experience, sharing first hand life experiences with Ipsen staff to support with their astounding work in research. Following on from this, Ipsen also asked me to get involved with other voluntary tasks to support their research and help those suffering and their families with FOP.

Living with FOP can be tough, but I am a great believer in keeping upbeat and positive to help with this. Personally, I feel that I suffer most with flares as a result of mental trauma I.e. stress, anxiety or busy times and therefore have an outlook on life where I do try to keep positive and occupied as much as possible, ensuring I keep busy but also have rest days or weekends to catch up. As I have gotten older, I have been able to work out the ‘warning signs’ or ‘feelings’ when I feel that I am starting with a flare and then can ensure that I take the appropriate steps for myself to prevent things getting worse. As we all know, FOP is so unpredictable and we never can really say when we’re getting a flare but I would advise to remember to try and keep strong, positive and not to worry too much. Worrying never solves anything and really often can make things worse. I used to be such a worrier and overthink so much, however my attitude has changed and personally I feel this has helped when I do get a flare.

Outside of work, I have a great social life with both family and friends – including holidays, cooking dinner for family / friends, going out for day trips and even nights out in places that I find comfortable and not too busy so I don’t get knocked over. I have a Springer Spaniel, called Spangle who is my best friend – she has recently celebrated her 14th birthday but still tries her best to act like a puppy! I have trained her in recent years to pick things up for me if I drop something on the floor and she understands only to do so with a set command. She also is trained to take things to say my mum or retrieve the mail from the post man (after the odd bark of course!) It is amazing what tricks and how dogs adapt to us and can often easily learn new tricks, even if they are classed as a ‘senior dog’. I enjoy short walks with Spangle and we visit Wales at least once a year and she loves to play on the beach and enjoys the holiday mode too! As a little hobby, I also make dog bow ties and bandanas and Spangle is my number one model for them, showing them off on her own instagram @_spanglethespringer – if anyone is interested, don’t hesitate to get in touch!”