Living with FOP

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Those three words: You Have FOP…

Being given the diagnosis of FOP shatters your world.  It takes time to process.  There are no rules on ‘how long’ it should take,  There are feelings, emotions, words you don’t understand…  You have no idea where to turn.

You will have a thousand questions, and hopefully, our website will have answered some of them.

Once those early days pass, you may want to reach out to others who understand where you are now.  They have also managed to come through the other side.  The diagnosis will never change, but you will learn that there is hope and a community of people who will be there to support you on your journey.

Living with a condition such as FOP brings many challenges to daily life.  Things that most people take for granted will require additional thought and planning, but people living with FOP prove on a daily basis that most challenges can be met head on.

There is a strong and supportive FOP community out there, and ready to welcome you in.  When you are ready.  There are a number of closed and secret Facebook groups where people in the FOP community ‘meet’ and share their experiences, but most importantly build real friendships.

To see a list of current groups, click: Facebook Support Groups


Follow us on Pinterest!

There is a wealth of information out there, dedicated to supporting people living with a complex medical condition.  We have collected some of that information together and put it on our Pinterest page for ease of use.

You will find links to:

  • Wish-granting charities
  • Emotional and wellbeing supprt
  • Travel solutions
  • Adaptive solutions for living as independently as possibly
  • Dental advice
  • Videos about FOP
  • School resources
  • Adaptive equipment charities
  • Fundraising advice

… and much more.  Click here to visit our boards: FOP Friends on Pinterest

Assistance Dogs

Many people living with FOP have an assistance dog to support them with everyday tasks, but also for friendship and support.

At our conference in 2018, we were honoured to have Chloe and Ted from Dog Aid come and speak.  Chloe shared her story about living with Ehlers-Danlos syndrome.  She talked about her struggles with managing daily tasks and explained how Ted helps her with all sorts of tasks, from taking her socks off, to being her best friend in the world.

There are a number of charities in the UK which provide assistance dogs.  There are some variations and considerations, but most places in the UK only arrange dogs for young people from the age of around 14.  If you are considering getting a dog, then the best place to start would be Assistance Dogs UK website.

The Harold & Elaine Kaplan Quality of L.I.F.E Awards

In 2019, Professor Fred Kaplan (pictured left, with his wife Tina Bales Kaplan, M.D) donated the money he received when he was awarded the The Grand Hamdan International Award in Medicine, to the IFOPA’s Quality of L.I.F.E Awards Program.  He made this gift in memory of his parents, Harold and Elaine, who had supported him throughout his education and career.  His parents enjoyed meeting the FOP patients and their families through the years, and Prof. Kaplan felt it was a fitting tribute to his parents to remember them with this Award.

The Award is granted by a committee, facilitated by the IFOPA.  Anyone with a confirmed diagnosis is welcome to apply.  Every person with FOP is entitled to a grant of $1,800, with the recipient deciding if they want to use the grant all at once, or in smaller increments across a number of years.

For more information about what the L.I.F.E Award can be used for, and how to apply, visit the IFOPA’s website: Living Independently with Full Equality.  



Kidz to Adultz Exhibitions

Organised by the Disabled Living organisation, these exhibitions are held around the UK every year.  They are FREE to attend and are dedicated to children and young adults up to 25 years, living with a disability or additional needs, although many of the products and information on offer is of value to anyone living with additional challenges.   They are suitable for everyone to attend: people with FOP, their parents, carers, and any professionals who support them.  The companies who attend truly understand their products and it provides an excellent opportunity for people to see the latest products in real life.



Friends with FOP

Over the years since diagnosis, we can honestly say that we have met some of the most amazing, funny, brave, inspirational, determined people one could ever hope to have the privilege of meeting.  No-one would ever choose a life with FOP, but if that is the hand that has been dealt, then there are true friends out there to be with you on this journey.

Take a look through our gallery…