I am one of the older mothers in the group. My girls are 24 and 23, so I have walked a little further down the path of teratogenic medication, as a carer, for longer than some. Like so many others I walked this path blindly moving from pillar to post, being continually tossed to the next challenge placed upon my path. My girls are my inspiration, they bring light into every corner of my life. I love them to bits, and it is my girls that have led me to where I am today.
I am just one in a team of amazing people; we are each dedicated to the wellbeing of those prenatally affected by teratogenic medication. I am continually amazed by the courage and fortitude of the many mums that live through impossible experiences, and yet, somehow keep moving onward, they have my total respect. These are women that can often find themselves facing prejudice, even from those that are closest to them, as well as being ostracised by those who should know better. The fathers that are present, have the strength and courage to be there for their families. The mother with her own challenges, could easily be a victim in life, yet with her child at their side she becomes a warrior with profound fortitude, these
are the fearless women, who have the determination to move mountains, and achieve the impossible. There are then of course those that are affected. Many of these will never be detected. They are likely to have complex health problems that are little understood and even ignored by those looking in. Socially their lives are difficult, not only are they disabled, but, as my daughter will remind me, many are also disabled young carers. Theirs is a story still unfolding.
Over and over bad experiences and good observations made by others led me to a point whereby I knew that something had to be done, there were too many unanswered questions, and too few doors had been opened. I am passionate about the need to ‘know’. There are too many questions and so very few answers, and too few to want to address the wider picture of teratogenic medicine.
I also want to see the subject of secondary mitochondrial dysfunction properly addressed. It took a lot of hard fighting but I have finally been diagnosed with hyperlactatemia and otoxicity, no one will call these secondary mitochondrial dysfunctions, unless I develop lactate acidosis. There needs to be a change in how the NHS manages medication overdoses and unidentified late onset mitochondrial disorders; and especially the more ‘occult’ aspect of adverse drug reactions.
The field of teratogenic medication is packed with unanswered questions, lots of theories and fear. I would like to take the bull by the horns and make some very real changes in how medicine is managed today. It is an issue of public safety in a very major way. There is too much slight of hand, so few see the reality of this situation. The question is; who has what it takes to take me ‘by the horns’ and make some waves.