This week’s blog was written by Cailin, who lives with Hao Fountain Syndrome. Cailin shares her rare journey below so others like her know that they’re not alone.
She would love to hear from other rare warriors!
Hello. My name is Cailin. I am twenty-five and have been diagnosed with Hao Fountain Syndrome, which commonly affects younger children. It is rather rare. I do things in my own unique ways and do things in a different way than others.
Hao Fountain Syndrome has impacted my daily life and no wonder some of the struggles that I’ve had in the past were all connected/linked to this rare disease.
I wanted to share with you all a bit of my life and how Hao Fountain Syndrome has affected me.
28th June 2022 – This was from one of the Facebook statuses that I posted. I wanted to let my family and friends know that I was gutted to say that I wouldn’t be able to go to Germany for a conference talk about this form of a rather rare syndrome as planned because I was wearing splints.
Due to an injury from a fall, I was told that I had torn a ligament and chipped a bone. I couldn’t even believe that something like this could happen from such a fall. Hopefully, I’ll be able to go to the next event after my serious injury and get to Germany another time.
Also in my past events, I had various things done, such as having my toes straightened and steroid injections. I’ve had them quite a few times since they weren’t working so I get rather sore feet (I have flat feet), so this would cause some more future struggles. I am determined not to let it get to me.
I’ve also had my T-Tubes removed from one ear, as it was moving about, was stuck and couldn’t find its way to come out of my outer ear hole. I had to have surgery for them to remove it. Then just not long ago, I recently had an ECG of my sleep pattern, as I twitch in the night. Sometimes I may stop breathing for a second – that is still an ongoing investigation of whether or not I have epilepsy seizers or sleep apnea.
All of these little things are most likely be all connected to my recent diagnosis. I am known to be prone to frequent UTIs and had kidney dysfunction. My bladder doesn’t empty itself, so I began self-catheterising.
I know I am giving away lots of my medical history, but I know in the future scientists are researching to find a cure for my condition. All of my different symptoms will be getting worse in the near future I would expect but hopefully, by then this gene Hao Fountain Syndrome will find its cure and can be treatable.
I want others like me out there to know that you are not alone! I want to reach out and connect with others who do have this certain gene. Right now, I’m one or two in a million who has it in the UK! I’m also the oldest to have ever been diagnosed with the USP7 gene.
If you have Hao Fountain Syndrome, please connect with me on Instagram at @Cailinmeara
You can also follow my family dog Poppy on Instagram at @Penny.thegreyhound.
I would love to hear from and reach out to others who are rare warriors!