What was your journey to diagnosis like, from the early symptoms to finally getting answers?
Well I was diagnosed with KFS at birth so I don’t have experience with not knowing what I have or early symptoms without knowing what it is, and I’m aware I’m lucky for that!! 🙂
How does Klippel-Feil Syndrome show up in your daily life, and what affects you the most?
KFS presents itself (for me) in various ways. Physical pain (which creates mental exhaustion), really bad posture, non regular periods and so many more things! What affects me the most is probably my physical pain, the bullying that comes with having a different physical body and definitely the posture which creates more pain!
In what ways, if any, has living with KFS impacted your relationship with your body over time?
well as I grew older, I started to realise why people would be mean and pity me. And that created a whole nother problem for me, not liking the way I look. So that has created a not very kind relationship from me towards my body. I’ve been dreaming of changing it, mutilating it and other things, but I’ve come to the realisation that it’s something I (literally) cannot change so I’ve just accepted who I am and ignore the haters 😂
What has it been like navigating the medical system and finding the right care?
the medical system is terrible. Everyone thinks they know what I’m going through but then doesn’t listen to my problems, doesn’t give me the right medications or just straight up thinks that they can just say whatever they want because “they’re the doctor” but there have been doctors that are really caring and listen to me when I say something’s not right. But it hasn’t been an easy journey at all.
What has the emotional or mental side of living with KFS been like for you?
well I developed depression at a young age due to the bullying my classmates and teachers would provide due to my KFS and so that has been difficult but now I’m a bit over it, sometimes I just wish I didn’t have it when I’m in a lot of pain or when I get stared at a lot but honestly, I’ve been through the worst part of the mental and emotional side of this!
KFS is classified as a rare disease, occurring in about 1 in 40,000 live births. What has it been like living with a condition so few people have?
Well, people aren’t really sure how to act when they see me or when I tell them what I have because almost no one has heard about it but explaining it is actually easy, you just have to sit and listen for a few minutes! And honestly it just means I’m special! ❤️🩹🫂🫶🏼
KFS has no cure. How do you think about the future, what you are uncertain about, what you hope for, and the life you are building within that reality?
I dont know how I feel about there potentially being a cure for KFS because that’s what defines me. If you asked me 10 years ago if I’d like for there to be a cure I’d 100% said “YES!” but I’m okay with my body now. So I don’t have much to say in that aspect ! 😊
What would you like people to understand about Klippel-Feil Syndrome, or about living with a rare condition?
Be kind. You never know what people are going through and a life with KFS is very difficult. There are people who can’t walk, there are people (like me) who suffer with physical pain every single day but still make it out of the house, and there are people that you can’t see it but they have their struggles too. Just because we are different doesn’t mean we are incompetent. We are important and should be taken seriously about our personal, professional and other problems.