A while ago, Klippel-Feil Syndrome Freedom announced the US Pain Foundation was looking for people who would share about their lives with dealing with chronic pain \u2014 so\u00a0I submitted my video about living with KFS. I received a message from someone I didn\u2019t know. The message said, \u201cHi! I don\u2019t know if you have noticed, but I have the same disability (KFS) as you\u00a0have. It\u2019s rare to find someone with the same problem so I am kind of delighted to find you.\u00a0I hope it\u2019s not a problem that I write you.\u201d\u00a0<\/em> Overfilled with joy, I didn\u2019t hesitate to reply.\u00a0 Just in the first few texts between us, I could\u00a0tell she was different than people I\u2019ve spoken to before.<\/p>\n Luca Farkas, a young Hungarian village girl, has gone through more than 50 surgeries. She is only 16 , but she\u2019s undoubtedly been through more than most peers her\u00a0age. I\u2019m 17, and I\u2019ve never met someone with these types of serious health issues (other than myself) who\u2019s just as positive, if\u00a0not moreso.<\/p>\n Related:<\/b>\u200b When the Facade of Strength Is Torn Down as a Chronically Ill Teenager<\/p>\n Neither of us have been able to relate to others our age, or meet others with our rare condition. It\u2019s so interesting to learn how it affects everyone a bit\u00a0differently, especially since it is such a complex condition. Until recently, the research on Klippel-Feil\u00a0syndrome regarding how it connects to other health issues hasn\u2019t been well understood by doctors.\u00a0Despite her medical history, Luca is definitely a memorable person in my\u00a0book. I was ecstatic when Luca gave me permission to share about our connection.<\/p>\n With a welcoming shy smile, soft hazel eyes, and beautiful brown hair to match \u2014\u00a0she\u2019d sure stop anyone in their tracks. Since Luca grew up in a village, she\u2019s naturally\u00a0formed a very strong bond with family and friends.\u00a0\u00a0Although she\u2019s always had constant support from the ones she loves, growing up\u00a0for Luca wasn\u2019t always fun and easy days. A large part of her time was spent in hospitals\u00a0with doctors poking her and trying to figure her out. Even with her joy-filled childhood,\u00a0there were still cold and lonely moments rooted from the pain. Moments where she\u2019s had\u00a0to learn to appreciate life and put all her trust in God. Regardless, all these things never stopped her from smiling and being grateful for the life she does have.\u00a0That\u2019s truly amazing, I would say.<\/p>\n Related:<\/b>\u200b 14 Common Myths About Living With Klippel-Feil Syndrome <\/p>\n Similar to many others who live with KFS, Luca struggles with multiple\u00a0challenges: physical, emotional, and mental. KFS is a musculoskeletal\u00a0disease causing abnormal fusing of the vertebrae, neck and spine. It can limit movement and cause a list of other symptoms.\u00a0These symptoms vary from person to person. With the disease resulting from genetic mutations,\u00a0there\u2019s no telling what may happen.<\/p>\n Luca struggled with confidence, like many young\u00a0kids facing painful rare diseases. In addition to KFS, she has also been diagnosed with hypertonia, or excess muscle tone in the limbs. Hypertonia causes the muscles in your body to be much more tense than normal.\u00a0This makes it more difficult to move and control your movements at times. It also greatly affects Luca\u2019s digestion. \u201cMy hypertonia\u00a0influenced my everyday in the past. I used to vomit blood, and had to be\u00a0operated on several times. I had a list of food to avoid (which irrtated my gullet),\u201d Luca told me\u00a0as I tried to not imagine the pain. She had to take medicine in order to maintain this\u00a0disease while she was younger. Luca assured me she grew out of the vomiting stage. I was happy to hear that story ended on a high note.<\/p>\n Related:<\/b>\u200b I’ve Decided It’s OK to Be Sick<\/p>\n As we talked some more, she shared some personal stories of how her disease has\u00a0impacted her the most. \u201cI was born with my KFS, but it got harder in my teenage years to\u00a0cope with it mentally, as I don\u2019t really have luck with boys.\u201d My heart twinged, understanding the feeling of rejection. \u201cI thought I was ugly. People see my conditions.\u00a0My face is asymmetrical. I don\u2019t wear ponytails and try to hide my hair when the wind\u00a0blows. My neck looks tiny and strange too. My hearing is not perfect. I had a sixth finger\u00a0on my right hand but it was operated when I was about 3 years old.\u201d\u00a0Luca struggled with self-confidence from fifth to eighth grade. She tried to have a\u00a0rolling bag in fifth grade, but the kids made so much fun of it. \u201cI hated it too. I didn\u2019t want to look different. Now I have the\u00a0\u2018normal\u2019 backpack, but it\u2019s heavy as shit,\u201d she said. I appreciated the honesty. I also knew personally, after years of living with KFS that carrying bags was no joke.\u00a0\u00a0Despite her S-curved spine, she didn\u2019t want to be different from anyone else. She\u00a0continued on like the rest of the crowd.<\/p>\n Many physicians may say that KFS doesn\u2019t cause pain, but it does, and diseases which may accompany KFS can cause even more pain. As a way to approach treatment, Luca has been attending\u00a0physiotherapy for the past 13 years. Physiotherapy is much like physical therapy. They\u00a0look at your condition plus its history, and then assign which exercises and devices will\u00a0work best for you. Many people with musculoskeletal\u00a0diseases have to take a gentle and consistent approach with treatment. Vigorous\u00a0movements and strain can just lead to even more complications.<\/p>\n Dealing with such a personal subject, I was happy Luca was comfortable enough to\u00a0open up about what\u2019s most frustrating with chronic illnesses. \u201cWhen I fall in love with\u00a0someone who doesn\u2019t reciprocate, I just can\u2019t help but think it\u2019s due to my condition,\u201d\u00a0Luca said. I could tell this message wasn\u2019t as light as others. When she said this, there\u00a0was another twinge of sadness inside me. I understood this feeling all too well. Comparing\u00a0yourself to the able-bodied kids around you and wondering why you can\u2019t do the same\u00a0simple things without looking different. Luca told me some more about her confidence and\u00a0what slowly chipped it away. She had a sixth finger which was removed when she was\u00a0younger, several reconstruction surgeries on her ear, and a shorter than average height and\u00a0neck length. With my background in this condition, none of these things seemed strange\u00a0to me. The silent inner struggle of a child being different is hard, and even harder when\u00a0there\u2019s no explanation or solution for it.\u00a0Most times it\u2019s not the pain which is the worst part \u2014 it\u2019s the mental strength needed\u00a0to continue.\u00a0<\/em><\/p>\n \u201cI had to say goodbye to my parents when they took me to the hospital after\u00a0vomiting. Oh. Those were hard times. Actually, I am used to the physical pain. The\u00a0hard times were played in my head, like when I was laying on the surgical beds in the cold\u00a0and shaking with fear,\u201d Luca explained. Moments like these are reminders of how\u00a0much people with chronic illnesses go through alone.<\/p>\n After listening to Luca Farkas\u2019 story, you realize it\u2019s not just the ability to go\u00a0through 50 surgeries that\u2019s remarkable, but the attitude you have after it\u2019s said and done.\u00a0Deciding that you want to be a positive person is powerful. Luca chooses to show the\u00a0world the love inside her, despite the cards she\u2019s been handed, even if the cards are a body that picks and chooses the days it wants to function. The small\u00a0moment in time that Luca chose positivity over everything else truly pointed her life\u00a0towards something amazing.<\/p>\n \u201cWhen I was alone in the hospital as a little child, I thought about God and\u00a0asked him for help. I was, am, and will always be a positive person. To me, it is the key to\u00a0everything, I guess,\u201d she exclaimed.<\/p>\n Creating a video for National Pain Awareness helped me rebuild my confidence after yet another cervical fusion surgery. It helped me open up about my challenges and understand it\u2019s OK to be vulnerable. I am so lucky to have had someone as sweet as Luca to reach out to me. With such a simple message, it created a new friendship despite being countries apart \u2014 and that is truly rare.<\/p>\n