“I stopped counting at a hundred bone fractures. I've been experiencing it up close and personal ever since.
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The first time I knew the intense impact a collagen-related connective tissue disorder could do as early as childhood was when an eight-year-old child in the hospital told me, “I stopped counting at a hundred bone fractures.”
I am familiar with collagen from the cream for your skin like a facial cream and seems to be processed even more in anti-aging cream. Other than that, it is unknown to me. Apparently Collagen means so much more!
I became acquainted with an 8-year-old child who was in the children's hospital for the week. We got talking and suddenly I was told the reason for this hospitalization. The first time I knew what an intense impact a collagen-related connective tissue disorder could do even from childhood life was when this 8-year-old child told me, “I stopped counting at a hundred bone fractures.” ... After hearing these words, I didn't quite know how to respond. I heard myself say, “Wow! How intense!” It was so unreal to me as if I stood outside this conversation for a moment as a listener and heard myself say these words.
Since then, I have been pushing for more awareness of collagen-related connective tissue disorders. Or so called: “Collagen Connective Tissue Disorders.”
In elementary school, I once explained more easily that it's like a kind of glue agent throughout your body. With this special glue you are flexible and can move easily, for example at gymnastics but also make strong fists. It also gives you a kind of resilience in your bones, so you can join in playing soccer or ballet and play around the schoolyard.
“Because there is no cure, current care is focused on symptom management.”
The poor production of connective tissue due to a defect in collagen production produces several rare diseases and even more unpleasant consequences that are so far incurable. Many bone fractures, dislocated joints, being wheelchair-bouned, life-threatening scars and even more are the consequences.
A father told me his story of life that his daughter died at the age of 40 from the effects of collagen connective tissue disease. Also, young children with the many broken bones have already spent many hours for surgeries. No, there are unfortunately no medicines to cure yet. Because there is no cure yet, current care is focused on symptom management.
“The pathway to effective medication.”
I am moved by the pain and sorrow our collagen-disease cause. The consequences of poor production of collagen connective tissue, that determines your life so badly. That you have to balance between your bone fractures, luxations, recovery, rehabilitation and simple well-being like “just going to school” what would be normal and a everyday-thing ... at such a young age.
Also, the consequences that affect your adult life is incredible. The psychological consequences are huge and then to know that “your disease” does not go away. I think it's quite something! Above all, I cannot stand by and do nothing. With Power Of Reflection, I focus on the road to an effective treatment. Noticeable improvements is worth a lot to me. I hear you say that it will take a while before anything really can happen? True, but everything starts with the first step. Am I right? Meanwhile, quality of life is paramount anyway. Moving toward this medication, we find anxiety and pain-free treatments and wheelchair accessibility equally valuable. These are essential contributors to being able to enjoy life.
“...Quality of life is paramount anyway. Moving toward this medication, we find anxiety and pain-free treatments and wheelchair accessibility equally valuable. These are essential contributors to being able to enjoy life."
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