Melkersson Rosenthal Syndrome

I will bare my soul here; please be kind...

In the years before I developed my illness, before I turned seven years old and everything changed; I had led a normal life, nothing extraordinary happened to me really. I wasn't unpopular at school nor was I part of any 'in' group but I got by without any real difficulties.

I am not saying that I was some Disney Princess who had been cast with a spell and on my seventh birthday I suddenly developed this unsightly illness, that I needed the kiss of a prince to finally be free of said illness. There would be a few things wrong with that scenario in essence anyway...

No what happened to this sweet, innocent little girl who loved to make mud pies on her Frisbee, would climb the trees that ran along the edge of Ribbleton Park just as well as any of the boys, carried her baby dolls under her arms while gripping a toy gun and pledging to protect her 'babies' at any cost, no what happened to that little girl was far more sinister and frightening than a fairy-tale wicked witch with a wand and a bug to bare, what happened to that little girl was an illness that would steal her identity bit by bit, year by year until she no longer existed.

With my sister; I am the one finding something highly hilarious...

It started out seemingly so simple and easy to fix; a cold sore, just one small cold sore on my mouth, that's all it was. We obviously didn't feel the need to panic, after all what harm could one little cold sore do to a child? I wouldn't need plastic surgery, I wasn't so vain that I wouldn't go to school, I wasn't in terrible pain, I didn't feel sick to my stomach. It was just a simple cold sore. Yet it wouldn't go, it appeared and refused to leave again, like an unwelcome visitor landing themselves on your doorstep, waltzing in like they own the place, messing your whole house up and refusing to take the hint and go on their merry way.

No this cold sore became the visitor from hell, because before long it had invited its whole bloody family, cousins, aunts, uncles, the lot! All taking up residence on my poor little face, yes the cold sore spread, which is essentially what my analogy is getting at. Why say it in two words when you can say it in ten? Anyway my mum did what any self respecting mother would do in her situation; she took me to the doctors. Not once but numerous times, each time coming away with a different cream, ointment, tablet, anything and everything that my general practitioner could throw at an unrelenting, unbudging, family of cold sores.

Months later and not only was the cold sore and his family still firmly in-situ but by now my lips had swollen grotesquely and my top lip was in fact smothered in one giant painful cold sore. It was referred to as the Herpes Simplex virus, basically the cold sore virus, my doctor could think of nothing more to do, it was simply unresponsive to any and all treatment that he could think of to try.

Eventually luck would have it that we would see a different GP not through any calculated effort on our part but that is simply what happened. This GP took one look at me, this now miserably, unhappy seven-year-old with the painfully swollen, afflicted lips and referred me to a Dermatologist at Royal Preston Hospital. This was no simple Herpes Simplex Virus; that much was now obvious and to me and my mum had in fact been obvious for some time. But you trust doctors, don't you?

So we went to my allotted hospital appointment and while no diagnosis was made, and wouldn't be for years to come. They took my situation seriously and immediately started medical investigations. In fact they were so appalled that I was not referred to the hospital sooner that they took the somewhat unheard of, and I would say somewhat unprofessional tact of bringing in the GP who failed to refer me and they gave him a verbal dressing down right in front of me and my parents.

I was humiliated for him and I wont name names as this doctor has only just retired from practice and I am sure learned a tough lesson that day.

"When you are going through hell, keep on going. Never never never give up." 

Winston Churchill

 I went through hell as a child, medically I went through numerous painful operations, some were called 'lip reductions' they would make incisions in my lips and cut tissue out before sewing them back up, they would swell so much that the stitches would be stretched as far as they would go. It was agony, I remember sitting with silent tears of pain rolling down my cheeks, tasting blood in my mouth and having to have my meals liquidized as I could not manage solid foods. Mum, who was adverse to giving us sweet treats, would get me chocolate desserts from the shop, the ones with fake cream on top, but I loved them and they felt like a well earned prize for going through such hell.

I was desperate for the swelling to go, I had gone from having friends at school to sitting in a corner on my own, praying that no one would notice me and make a beeline for me, that no one would choose today as yet another day to make my life hell. Name calling that left me humiliated and literally wanting the ground to open up and swallow me, I just wanted to disappear. I HATED being me, I was seven-years-old and I hated living my life. It was pain and embarrassment in equal measures but I knew it hurt my parents to know that and I remember thinking that I didn't want them to know just how bad it was as maybe then they would be embarrassed by me too and would feel guilty even though there was nothing that they could do.

"The words they say make bruises that don't fade away..."

Unknown

But then there were times that it was unavoidable, I was once walking home from school with mum and you would think that me being with an adult would give me a free ride? But no, a group of kids sitting on the curb decided then would be the perfect time to start shouting the usual barrage of cruel names; "rubber lips" "big lips" "dinghy lips" the odd "paki" thrown in for good measure because of my brown skin and mixed heritage. They threw stones and spat at me as we walked past, mum told me to ignore them, but I could feel her bristling and I willed her not to do or say anything, not to make it worse. I didn't want my mum to see me like that, to witness her daughter; The Victim. That night I cried tears of shame and I don't think I have ever really stopped.

Whatever I have been through since, and there has been untold medical procedures and personal endurances, which I will divulge at a later date, that day was one that is firmly implanted in my memory. It's the day that I knew it was over, the facade I thought I had successfully put on was finished and now everyone knew that no one liked or accepted me. I couldn't pretend anymore, I didn't fit. I was different, because I looked different and no amount of desperate surgeries, medical procedures, weird obscure medications seemed to be the answer. I was Frankenstein's Monster minus the notoriety. And with no Frankenstein that little seven-year-old girl grew up each year to be more and more alone.