Define the word COMMUNITY?
By Koko Oloko
"A group of people living in the same place or having a particular characteristic in common."
"The condition of sharing or having certain attitudes and interests in common."
The latter statement is probably what Nina Knight would cling to because after giving birth to her second child, a girl, she suddenly found herself in the world of rare genetic disease; namely, Acrodysostosis.
Being such a rare disease there was no one Nina Knight and her husband could turn to, well, that’s what Nina thought initially. But, they came across a Facebook group set up in 2015 which brought together other families that were living with the same condition.
The small but determined community, initially comprising of two members, has now grown to up to one hundred members representing 71 patients suffering from the condition worldwide.
Nina and the group can now celebrate the fact that the community has grown with the addition of medical experts interested in rare genetic conditions such as Acrodysostosis.
What’s so compelling about Nina’s journey is that she started as a business owner of a furniture pack company that held big contracts in countries such as Egypt, furnishing exquisite holiday homes, but because of her daughter’s rare genetic condition, she now finds herself putting all her energy into this new found passion.
A growing community that supports one and other and together they hope to change the future landscape for those living with the disease.
Nina has recently registered a charity in the name of ‘Acrodysostosis Support and Research’ from her home in SE15 as a way of making a difference to the lives of others who are dealing with a genetic rare disease in their family.
She wants to offer support where she found support by reaching out to a wider community. You can find out more on Acrodysostosis by going to the website: