By Kirsty, Netherton syndrome, United Kingdom, March 25, 2021
Like any rare condition, living with nethertons syndrome is a daily battle and the last three months has reminded me that I'm not in control of body. It's been tough! I've struggled, I've cried, I've felt beaten and worse I've felt alone! I have a wonderful family. Husband of 15 years and two beautiful children who are awesome but unless you have this then they don't understand what it's like (not their fault) and for the last three months I've been on autopilot caring for them, working and home schooling as well as managing and coping with my condition. At times I have felt completely beaten! I've been on antibiotics since Christmas with continuous skin infections but every time we make head way my allergies kick in and cause major skin reactions which sets off a cycle for my skin condition. It's been painful, so so painful at times that I've been unable to walk, put socks on or even put slippers or shoes on because my feet are so bad. And then I have to battle with my hands with constant itching and weeping. Changing my dressings which takes an age twice a day. I remember for nearly a week it was painful all over just wearing light clothes. I'm still no better but after coming out of lockdown the hospital departments have finally agreed to see me again. I'm hopeful and I know in a few months time Things will seem better. I knew it was time to reach out and ask for that support from my family and friends and Ive started talking this week and feel like Ive started to dig myself back out of this hole. This is the first time I've felt like this about my condition as normally I just get on with it and dont let it phase me but this time it's been tough with the added stress of coronavirus and lockdown.
I wanted to share my story and let others know 'it's ok to not be ok sometimes but please share your thoughts and worries with your loved ones!'