Welcome back to our series "Letters to my younger self".
If you could, what would you tell a younger you? What advice would you give? What tips could a younger you use to deal with the struggles you know are coming?
In this series, RARE Youth Revolution are reaching to some of the slightly older members of our community who know what it is like to grow up with a rare disease.
By writing letters to their younger selves, we hope that they can offer some advice and guidance that benefits all young people with rare diseases.
This entry comes from Maria, who is impacted by Fibrodysplasia Ossificans Progressiva (FOP).
This is Maria's LETTER TO MY YOUNGER SELF!
Dear younger self, At the age of 16 you finally got your diagnosis named Fibrodysplasia Ossificans Progressiva (FOP). This disease is the only known disease where one body system turns into another. Even now 10 years later, while you have a better and deeper understanding of the disease, this mechanism seems unreal to you. How does soft tissue becoming hard bone forming a second skeleton be your ‘’normal’’? From adolescence, this disease has progressed and has stolen many things from your everyday life. The first thing I remember is losing the ability to put on socks and tie shoelaces. For the socks, you bought sock aids and now you buy shoes without laces to keep your independence. Furthermore, you stopped all the sports you loved so much, such as tennis, skiing, bicycling, because even the simplest trauma can activate the disease. Only swimming is allowed, which does not have the action and intensity of other sports. But you learned to love it and it has become an integral part of you. What I want to remind you is that every moment is the best possible state of motion, so take advantage of it! FOP is progressive, catastrophic and is not friendly. I know this is a hard statement to hear, but stay positive as some drugs are in clinical trial phases and we are hopefully close to finding a cure.
Keep in mind that as important it is to focus on your potential and what you are capable of, it is also important to remember what you can’t do. Which unfortunately, are many and vary. From not being able to hold your hair in a ponytail, or grab a glass from the cupboard, to not being able to travel alone. Your neck is stuck in the same position, like other areas of your body. You can’t turn your neck right, left, up or down, which means you have to change the position of your whole body if you want to see something on your right or to look at the sky. For the majority of limitations, you have found alternatives and learned to be adaptable and creative.
You must remember that these limitations are part of the progression of the disease and it is okay to be sad about that too. It’s the reality of what it is like to live with a rare disease—there is much grief that comes along with it.
On the other hand, what you want and can achieve is just as much and you have the strength and the desire to try. One of the hardest things about a chronic illness is constantly trying to accept your new reality, your new mobility and your new appearance. You have learned that over time this becomes easier and you have accepted it. But you must let yourself grieve.
You will feel alone and unique in the world, but very soon, you will meet other people with rare diseases and you will share your story, your symptoms, your thoughts and your knowledge. You are still the only known person in your country with FOP, but currently you are trying to find ways to educate doctors so it will be easier to recognise the disease. Keep going, you are doing a great job!
Moreover, one thing you still wish would change is not having to be your own doctor. You will need to make many medical decisions and have the responsibilities of them. During the flares, this is psychologically hard because you have to have the clarity and critical ability to make decisions that are difficult in themselves. You wish doctors knew that 5 minutes of their day can affect your life for months—you know that they don't have a solution, but physiologically their presence is significant.
The year 2022 was the hardest. It was a heartbreaking, painful year because you were 7 months into a flare-up with daily continuous pains, restriction of arm movement and a continuous anxiety, hopelessness and agony—you could not see light at the end of the tunnel. You had to and you stayed at home many weeks, months looking for small tasks and projects you could participate in to feel productive. Fast forward, the flare up passed and you did great. A tip from a more experienced side of you is that some days, listening to your body is not wasting time, but is 100% the most productive thing you can do!
You finally managed to participate in the clinical trial and the experimental drug managed to put the bear (disease) to sleep. You feel free to breathe again! Today, exactly one year after the start of the first flare, you have regained your balance and you can pick up life where you left it.
You are in a constant battle of finding and losing your independence. An integral part of the disease is the struggle to stay independent, but so far you have won many battles.You went on vacation, you managed to swim, you can take your dog, Nora out on your own. You can drive and you just need to pass the last lesson to complete your studies! They may seem insignificant or small now, but during the last year, none of them seemed possible. A difficult year is over, but the next has begun with many plans, dreams and you are ready to take any opportunities that come your way!
A reminder for all the fighters: I hope you find time to be happy, not just strong. - Louise Kaufmann
Maria (26 years olds you)