So sad Jacqui, how not much money or research goes into this and how lonely and isolated you must have felt. To a much much lesser degree I had something wrong internally with my bowels, I was diagnosed with Crohn’s disease, but when I swallowed the camera they said it’s not Crohn’s, I had seven operations and a wound that you could fit your fist in that just wouldn’t heal fir 2 years. There was no support, no support group. I felt desperate and had painful treatments to try burn the skin to heal !??? So I really think it’s fantastic that you are there fighting the fight for NF patients.
I never understood until I started my degree in physiology just how little we really know about the human body. And after NF it gets even less. I am so sad that you had to go thro that. My fistula was horrible, but it didn't take two years. I would have lost my mind. I am trying to fight, but sometimes it feels like nobody wants to listen...
Such a lonely and painful experience to go through, Jacqui, and you've described so well here the "aftershocks". I do hope the research into the vaccine brings results.
Thanks Wendy. It made my day today when @Isabel Struik posted her comment and I found out that I’d helped at least one person feel less alone when going through a similar experience. That was my goal all along when it came to writing the book.
And yes, I think there are a lot of people hoping that they can develop an effective vaccine. Unfortunately coming from that industry I’m all too well aware of the failure rates and the length of time it can take to get a new drug of any kind to the market. But I have everything crossed!
Yes, a community support group would be so helpful. I can understand how alone you felt and how that didn’t help with recovery. I was so relieved to hear they are going to develop a vaccine to protect and prevent others going through the same thing you did.
In amongst the research and papers published there is a Danish post about 35 people in Denmark being affected by the same bacteria over a few months. Is that usual? Or have I got that wrong? I wonder why and how common it is elsewhere.
Thank you so much for sharing your story/experience with me. I talked about your post last week With Mary and our VSO friends. We agreed they would all b3 interested in reading it. Mary is going to share your story with them all.
Hi Sue - fingers crossed that they’ll be successful developing a vaccine in the coming years. It would be a total game changer.
The references section covers chapters 21, 22 and 23. So if you go back to 21. Science & Statistics then you’ll find the info about how many people get NF and I talk about that Danish data. There was definitely a big uptick around the time I got sick with more people contracting NF and dying from it within a few months than we’ve previously seen in a full year. From what I’ve seen the Western European countries and the US have roughly similar incidence rates. https://jacquigatehouse.substack.com/p/chapter-21-part-1-neck-re-tie-zing?r=379ytl
Thank you once again for your story. I so fully appreciate the need to connect with people who have been through something similar. Even though I didn’t have NF and my injury has been smaller it has been so familiar and very beneficial for me to read. It has been a book of recognition to me even though it was at a different scale. And yes I did need the skin transplant and it is no picnic! I look forward to your final chapter and may need to re-read the first chapters as I was reading these whilst being in the hospital :)
Thank you Isabel. I cried when I read your comment this morning. It means so much to me that my story has resonated for you when you were in a similar situation. That was exactly what motivated me to write my story down. Thank you so much for commenting and letting me know that every minute I spent on this book was worth it. 🤗💐
So sad Jacqui, how not much money or research goes into this and how lonely and isolated you must have felt. To a much much lesser degree I had something wrong internally with my bowels, I was diagnosed with Crohn’s disease, but when I swallowed the camera they said it’s not Crohn’s, I had seven operations and a wound that you could fit your fist in that just wouldn’t heal fir 2 years. There was no support, no support group. I felt desperate and had painful treatments to try burn the skin to heal !??? So I really think it’s fantastic that you are there fighting the fight for NF patients.
I never understood until I started my degree in physiology just how little we really know about the human body. And after NF it gets even less. I am so sad that you had to go thro that. My fistula was horrible, but it didn't take two years. I would have lost my mind. I am trying to fight, but sometimes it feels like nobody wants to listen...
Thanks Jacqui, it’s so tough isn’t it.
Such a lonely and painful experience to go through, Jacqui, and you've described so well here the "aftershocks". I do hope the research into the vaccine brings results.
Thanks Wendy. It made my day today when @Isabel Struik posted her comment and I found out that I’d helped at least one person feel less alone when going through a similar experience. That was my goal all along when it came to writing the book.
And yes, I think there are a lot of people hoping that they can develop an effective vaccine. Unfortunately coming from that industry I’m all too well aware of the failure rates and the length of time it can take to get a new drug of any kind to the market. But I have everything crossed!
Yes, a community support group would be so helpful. I can understand how alone you felt and how that didn’t help with recovery. I was so relieved to hear they are going to develop a vaccine to protect and prevent others going through the same thing you did.
In amongst the research and papers published there is a Danish post about 35 people in Denmark being affected by the same bacteria over a few months. Is that usual? Or have I got that wrong? I wonder why and how common it is elsewhere.
Thank you so much for sharing your story/experience with me. I talked about your post last week With Mary and our VSO friends. We agreed they would all b3 interested in reading it. Mary is going to share your story with them all.
Hi Sue - fingers crossed that they’ll be successful developing a vaccine in the coming years. It would be a total game changer.
The references section covers chapters 21, 22 and 23. So if you go back to 21. Science & Statistics then you’ll find the info about how many people get NF and I talk about that Danish data. There was definitely a big uptick around the time I got sick with more people contracting NF and dying from it within a few months than we’ve previously seen in a full year. From what I’ve seen the Western European countries and the US have roughly similar incidence rates. https://jacquigatehouse.substack.com/p/chapter-21-part-1-neck-re-tie-zing?r=379ytl
Thank you once again for your story. I so fully appreciate the need to connect with people who have been through something similar. Even though I didn’t have NF and my injury has been smaller it has been so familiar and very beneficial for me to read. It has been a book of recognition to me even though it was at a different scale. And yes I did need the skin transplant and it is no picnic! I look forward to your final chapter and may need to re-read the first chapters as I was reading these whilst being in the hospital :)
Thank you Isabel. I cried when I read your comment this morning. It means so much to me that my story has resonated for you when you were in a similar situation. That was exactly what motivated me to write my story down. Thank you so much for commenting and letting me know that every minute I spent on this book was worth it. 🤗💐