The moving story of 27-year-old Carla Henrotay was described by foreign media, including: British . The young woman suffers from a rare disease which, as she says, causes her to “grow a second skeleton.” Despite the enormous difficulties she faces every day, the American from Missouri tries to maintain peace of mind, a positive attitude and makes her dreams come true. I want to live normally. Fortunately, she has loved ones around her who support her in the hardest moments.
The 27-year-old suffers from fibrodysplasia, also known as progressive muscle ossification (FOP – fibrodysplasia ossificans progressiva). The “second skeleton” is, of course, a metaphor, because this rare genetic disorder actually causes ossification of soft tissues, such as muscles. In Carla’s case, this happens, for example, as a result of an impact or fall. The woman uses a wheelchair.
Carli is 27 and has a very rare disease. He talks about the “second skeleton”
Her parents heard this diagnosis from a doctor when Carli was only 5 years old. The specialist then advised them to be careful, but nevertheless stressed that they should not let the disease take away the joy of Carla’s childhood. – (…) So we just found safer ways for me to interact with the world – recalled Carli in an interview with “The Mirror”.
A few years later, however, the disease progressed and the American lost mobility in her left knee and hip. She could no longer walk on her own. Since then, he has been using a wheelchair and cannot get out of bed without help. He says he feels “some level of pain in his body 24/7.” Carla’s attitude is extremely inspiring – the girl focuses on what she can influence and tries to improve it. She can count on the help of her family and her beloved boyfriend. He also has a service dog named Patience.
Carli has very specific plans for the future. She wants to start a family with her beloved, using the services of a surrogate mother or adoption. She dreams of a house with a swimming pool – because water activities are highly recommended for people suffering from similar diseases. He also says he wants to inspire other FOP sufferers to “chase their dreams” and “focus on the positives.”
Not having a plan for your life is very difficult, but I think it’s important to live your life the best you can. I can always dwell on the fact that I can’t walk or can’t do normal things, but that would, in the long run, take away from the life I have now and the things I can do
– explain.
“My back was made of bones”
She also went back to when her family first learned about FOP. As she said, it all started with her back. At the age of 5, she confessed, “she couldn’t bend at the waist.
My whole back was made of bones. It has been like this ever since, and then I lost the ability to move my arms and raise my arms above my head. Something small happens and it causes a whole domino effect
– she explained. Just two years later, the disease began to manifest itself in the jaw, which became completely “locked,” Carli recalled. A series of surgeries she had to undergo (removal of wisdom teeth and 4 molars) enabled her to eat solid food and take medications.
If it weren’t for the surgeries, she would have to be on a liquid diet. She says it would make her very unhappy – because she loves Froot Loops with marshmallows. “Because of my illness, I can’t control many things, but I can control what I eat,” she said. “I feel like I’ve been through enough suffering and pain, and at the end of the day I deserve ice cream,” the 27-year-old added.
From the age of 7, Carli “tried to be as independent as possible.” Her first service dog was Ralphie. Since 2015, she has been accompanied by the previously mentioned Patience. – He is everything I could hope for in another dog. She walked with me through my sophomore and senior years of college. She is very important to me, said the American.
She helps me with things like picking things up, which is very helpful, and she can open and close drawers, which is still her favorite thing to do. He can press buttons for automatic doors and knows a total of over 40 commands. But it’s also about taking attention away from me about my disability
– she mentioned.
“I went from walking to the point where I couldn’t get out of bed.”
After graduating from college, Carli moved in with her boyfriend of 10 years. The man works in the IT industry. Together, they adapted the house so that Carli could feel safe and at ease there.
I went from being able to walk to the point where I can’t get out of bed, I can’t get off the couch, I have difficulty getting out of my wheelchair. It was really difficult
– she said. However, she added that since she lost the ability to move independently, she has been very focused on her physical and mental health. He has many dreams that he wants to fulfill and wants to help increase public awareness of this rare disease.
– There are many negatives in this life and in this world. Especially a debilitating, progressive disease, but I try to focus on the positives. I just want to show up and do my best every day, she concluded in an interview with The Mirror.
Fibrodysplasia. What is this?
The above-described fibrodysplasia (FOP), also called Munchmeyer’s disease (progressive muscle ossification or progressive myositis ossificans), is a very rare genetic disease. It manifests itself, as we mentioned above, in the ossification of soft tissues. Its occurrence is estimated at approximately 0.6 cases per million. In 2008, only 700 cases of this disease were reported worldwide. In Poland, in 2007, there were 15 patients with FOP. FOP is on the Orphanet list of rare diseases, which collects and promotes knowledge about rare diseases, contributing to improving the diagnosis, care and treatment of patients affected by them.
What are the symptoms of FOP? Already in newborns, FOP may manifest itself as valgus or shortening of the big toes, shortened thumbs, etc. The first outbreaks usually appear in the patient during the first decade of life. changes are most often observed in the spine, lower and upper limbs. In places where ossification forms, patients may experience pain, swelling, muscle hardening and decreased mobility.
Source: Gazeta
Bruce is a talented author and journalist with a passion for entertainment . He currently works as a writer at the 247 News Agency, where he has established himself as a respected voice in the industry.
