In a slightly unexpected way I got into trouble with TikTok this week for spreading misinformation. I created a pair of videos discussing the situation of the FVSD families and how the government has responded. The second video was posted no issues however the first video which was posted they took issue with claiming disinformation and political posturing which honestly it was neither. It threw up warnings and was taken down by TikTok. I appealed and it was rejected and then when I tried to complain there was no response. It's a common issue with the platform that creators don't have the ability to discuss complaints or issues with a human. I'll post the videos and let you decide if it was inappropriate. Please email me with your feedback. Jockamum@gmail.com
In my own way I want to help raise awareness about the situation and help out but this story has been going on for decades. It's not my war but it's a battle I'm happy to help with due to mutual interest.
I've met a few angry souls in the comments section accusing me of seeking a payout but regretfully I don't seek the compensation that was recommended. I do absolutely think the families need and deserve it.
instead I want fair access to healthcare and funding for research to help the families understand what changes may have occurred particularly hormonally. All four of my children have minor features of FVSD. However there are mixed opinions on whether it actually does. I was able to arrange a meeting with a Mr Harry Leitch, he's a geneticist primarily based in Great Ormand Street Hospital and I felt that based on what he said he wasn't convinced about the evidence found in the rat studies. He gave me some excellent advice for moving forward and I plan to do whatever I can to get at least my boys assessed by genetics. I'm aware that I might meet a lot of resistance here but it wouldn't even be a consideration for me if they both didn't seem to have a mystery condition causing Ketotic hypoglycaemia with slight ammonia spikes. I have a feeling in my bones that something is wrong and I can't explain why if they had nothing wrong with them I would brush it of as anxiety but I feel like it's connected to FVSD since meeting another family like ours in Manchester.
the long term plan for the Jockamum blog will be to keep it as a source of information and almost a time capsule of what we are going through at this point in time. If it takes off it may evolve into a place for mums living with chronic illness. I'm not all that sure. I just want to do something that helps others have less of a bad day.
part one & part two are listed below