The story of Michelle
I was diagnosed with epilepsy after two yrs of black out, numerous ecg test and reveal monitors as doctors said it was an issue with my heart, it was on this hospital admission I first heard the words brain herniation or chari malformation, Before I could be send home the doctors wanted me to have a CT scan to make sure there were no blood clota to my brain as I had suffered from blood clots since my pregnancy back in 2005. I was getting ready to go home when the doctor told me I had to stay another night as the cr scan showed I had a mass at the back of myscull my head spun and my heart sank as the first illness that came to my mind  was OMG CANCER it was the worst 12 hrs of my life waiting for the mri scan it showed I had a ceribal herniation of 2.5 / 3 mm below the formal magnum and should not cause me any problems as I was born with so I’d be ok. At first this was a plus for me but the more o thought about it the more confused I got, I had a head cat scan 12 moths before and they never mentioned it so I looked it up and I felt stunned I saw that I was born with a weak skull and the bottom parts of the skull comes away and the bottom part of ur brain protrudes out and it gradually gets bigger but as it’s not common in this country the doctors wait for synops ( a cyst ) to form in the spinal column mean while my seizures were worse and my meds had now double and I was still have multiple seizures I kept on at the doctors but was made to feel silly meanwhile they just increased myepilepsy meds I kept telling them about the side effects due to this I was diagnosed with social anxiety and PTSD dturing all of this time I was also diagnosed with factor five v laiden heteogys which means inherited a mutated bloodgene from my father and I have a protein s sefiency amoung other illness, my journey has showed me some doctors are not educated enough in regards to rare disorders this seems unfair as they may never see them in the working life but what about patients like me their neglect can put my life at risk . As a result I nearly lost my life and my daughters in child birth I had to give up my rights to have another child I am in pain from damage the clots left I have suffered a PE I have social anxiety and feel I am afraid of life. I have lost my driving licence my job my independence my confidence in doctors but most important myself. I strongly believe and try to promote that EDUCATION is key to help people understand what a hard battle it is and what a Lonley place it can be that’s why I get involved as educating one person  a step forward thank you for reading my storyÂ