If you’ve been reading or following my blog posts for a while now, or read the article that I wrote for Amoena, or even watched my YouTube videos, then you’ll know I have a few deformities.
A few years ago I was diagnosed by my doctors with Poland Syndrome.
Poland Syndrome is very rare so none of my doctors had actually seen it before, and even though I begged for tests or to see a specialist, my doctors told me that nobody would waste their time scanning me and that I should just trust what they say.
Due to my deformity affected my chest, e.g. making one of my breasts never grow, I was offered a free boob job from the NHS.
I declined and decided that I would rather have a fake silicone prosthetic that I could wear in my bra and take out whenever I wanted, so I have to be measured for a new one every year as my normal breast grows.
My usual appointments for my “fitting” were at my local hospital, but one day last year my doctor mistakingly sent me to a hospital further away.
I went for my fitting and told the woman there that I had Poland Syndrome. She told me that the hospital I was in had a specialist who deals with Poland Syndrome and similar issues.
She made me an appointment with the specialist and I went back to the hospital a few months later to see her.
The specialist took a look at my chest and felt my muscles, but told me that she had never seen a Poland Syndrome like mine before. Plus, because of my other deformities in my hands, shoulders and legs, she believed that they were all linked together.
She contacted genetic specialists around the country to ask if there is a known syndrome that includes all of my symptoms, and they all said no.
Nobody had heard of it, it didn’t even have a name and had never been seen before, making me the first person to ever have this.
Eventually I had an ultrasound scan on my chest, which showed that my muscles were there, which didn’t explain why my breast never grew.
It was clear that there would be no way of finding out any answers, and it would never have a name.
I was told to just move on with my life as it wasn’t having any issue on my breathing or heart, I’m never going to know, the doctors don’t want to write it down as they doubt they’ll ever see it again, and I’ll just have to deal with it never having a name.
So now when anyone asks “what do you have” or “what’s wrong with you?” I can’t even say because I don’t even know.
I wish I did, but I’m undiagnosable and I just thought that I should update you all incase you still believed that I had Poland Syndrome.
If you want to read more about my time growing up with this deformity (which at the time of me writing this article I thought it was Poland Syndrome) then read my article for Amoena here which is more in-depth –
You can also check out my YouTube video about this update here –
Thanks for reading and I’ll see you guys next time.
Best wishes ~ Becca x