As a mom to a 6 month old CF son I am so very sorry for what you went through. My heart hurts for your childhood self. Thank you for sharing your story
You've navigated so much without support or compassion, especially through your formative years. Thank you for sharing this - with so much dignity. You're an eloquent speaker, Shad - your experiences deserve to be heard.
Oh Shad, I know we've only known each other for a few weeks, but this is a very brave and honest first video account of your experienced growing up without knowledge of having CF. I am so sorry that the lack of awareness of your condition has meant that you were on the receiving end of repeated illness, unkind words and loneliness. Thank you for boldly sharing to help us understand more about CF. I hope your message will help others with CF and pave the way to ensuring that folk with ongoing, repeated symptoms are supported to an early diagnosis.
All the best to you Shad, I was diagnosed at 3 months old I’m 60 now. I had a rubbish school experience in the 60s and 70s . You deserve better, you shine .
Hello my name is Carolyn Long you very well have my support. I had pediatric Fibromyaliga at the age of nine and wasn't diagnosed until age 24 I suffered in pain for years until one day my circulation cut off in my legs. I was in college at the time and fed up with unknown symptoms I finally went to the school nurse. One year later I was diagnosed with Fibromyalgia and Pariferal Artery disease. I'm going to write my book called Getting Past The pain. I don't blame the parents they simply did know but. It's extremely important that we as a society understand that early diagnosis can change lives and even save them.
I blame your mother, your family, your friends, your teachers, doctors, nurses, and the society. I wholeheartedly blame all of them whether you agree with me or not. It's been a long time since people should do better and they still are not. Many such disorders are left undiagnosed and so many sufferers of various diseases get blamed for them, or for faking them. Society needs to do better.
Hey. thank you for your feedback! Not so much faking the infection, but I was accused of faking my reaction to the symptoms - like tiredness, fatigue, fevers. And that was tough with no one in my corner.
They were HORSESHIT to do that to a little kid! I got alot of crap about my health problems too. I nerded out but they still they I'm a hypochondriac. I called today to ask my gp for a cf chloride sweat test and the nurse was like "I don't know what that is" so she had me call the blood lab, that guy said "I've never heard of that". I couldv'e slapped tham! How uneducated they are.
Who was your GP back then, the one who said "I don't believe you"? If you're reading this, GP, let us know on what basis you allowed yourself to express such a belief. Especially since we're not talking about a religion, but about science.
Thank you for this heartwarming video, I’m very sorry to hear about the injustices you’ve faced. Ignorance really does cause this. I do have a question. You mentioned that you had an A typical mutation of CF. I had a genetic test done and it said that I had CFTR gene however into the gene code, it said “A” which they didn’t know the significance. I’m just wondering if it’s the same as what you have the A typical.
I have my own perceptions on why my doctors didn't want to help me. It's a stretch for a doctor to say a patient is faking without even considering any tests.
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As a mom to a 6 month old CF son I am so very sorry for what you went through. My heart hurts for your childhood self. Thank you for sharing your story
Same as you ❤
You've navigated so much without support or compassion, especially through your formative years. Thank you for sharing this - with so much dignity. You're an eloquent speaker, Shad - your experiences deserve to be heard.
Thank you Alex for taking the time to watch this. Much appreciated!
Oh Shad, I know we've only known each other for a few weeks, but this is a very brave and honest first video account of your experienced growing up without knowledge of having CF. I am so sorry that the lack of awareness of your condition has meant that you were on the receiving end of repeated illness, unkind words and loneliness. Thank you for boldly sharing to help us understand more about CF. I hope your message will help others with CF and pave the way to ensuring that folk with ongoing, repeated symptoms are supported to an early diagnosis.
"The doctors I would look for help and support... but they never came."
OMG.... so true for me too.
All the best to you Shad, I was diagnosed at 3 months old I’m 60 now.
I had a rubbish school experience in the 60s and 70s .
You deserve better, you shine .
Hello my name is Carolyn Long you very well have my support. I had pediatric Fibromyaliga at the age of nine and wasn't diagnosed until age 24 I suffered in pain for years until one day my circulation cut off in my legs. I was in college at the time and fed up with unknown symptoms I finally went to the school nurse. One year later I was diagnosed with Fibromyalgia and Pariferal Artery disease. I'm going to write my book called Getting Past The pain. I don't blame the parents they simply did know but. It's extremely important that we as a society understand that early diagnosis can change lives and even save them.
Your video helped me. Thank you. I am not so alone.
I blame your mother, your family, your friends, your teachers, doctors, nurses, and the society. I wholeheartedly blame all of them whether you agree with me or not. It's been a long time since people should do better and they still are not. Many such disorders are left undiagnosed and so many sufferers of various diseases get blamed for them, or for faking them. Society needs to do better.
God our lives are similar.... even down to the maths teacher.
I am atypical too.
How can you fake a chest infection?
Hey. thank you for your feedback! Not so much faking the infection, but I was accused of faking my reaction to the symptoms - like tiredness, fatigue, fevers. And that was tough with no one in my corner.
hey ishad i well keep you in my prayes for you
They blamed me too...
They were HORSESHIT to do that to a little kid!
I got alot of crap about my health problems too. I nerded out but they still they I'm a hypochondriac.
I called today to ask my gp for a cf chloride sweat test and the nurse was like "I don't know what that is" so she had me call the blood lab, that guy said "I've never heard of that".
I couldv'e slapped tham! How uneducated they are.
What happened to you is more than maddening. It’s cruel. A 15 minute test. That’s all it took. Terrible.
Who was your GP back then, the one who said "I don't believe you"? If you're reading this, GP, let us know on what basis you allowed yourself to express such a belief. Especially since we're not talking about a religion, but about science.
Thank you for this heartwarming video, I’m very sorry to hear about the injustices you’ve faced. Ignorance really does cause this.
I do have a question. You mentioned that you had an A typical mutation of CF. I had a genetic test done and it said that I had CFTR gene however into the gene code, it said “A” which they didn’t know the significance. I’m just wondering if it’s the same as what you have the A typical.
Sounds like me. It's hard to find any doctor that is even willing to do those tests.
I have my own perceptions on why my doctors didn't want to help me. It's a stretch for a doctor to say a patient is faking without even considering any tests.
😍 I hope you have found people that are caring and nice to you.
🌼
Gosh Shad, I was oblivious to so much of this. I am so sorry, thanks for sharing this. We must get together again when it's safe.
Thank Erik for taking the time. Much appreciated. It would be wonderful to see you!