Hello, my name is Anusha Joseph; I am single and 36 years old. My family consists of my beloved parents, sister, brother in law and myself.
Well I am going to tell you about my struggle and challenging experiences of trying to overcome my long-term illnesses and disability.
For some of you who read this may not have heard of Wilsonís Disease I have Neurological but definitely you would all know about Epilepsy also I have Tonic clonic seizures I will try to explain the best I can. .
Neurological Wilson's disease is a rare genetic disease in which copper builds up in the body but is mainly in the liver, eyes and the brain. If Wilson's disease is untreated or undiagnosed it may lead to death of a human being. Wilson's disease is controlled treatment which is taking medication to remove the excess copper and to prevent a further build up of copper. It can be diagnosed through a series of widely available medical tests that explore the liver function. These medical tests vary from blood tests, eyes, brain scans and urine tests. All these tests show the neurological activity in an individual to seek whether he or she has Wilson's disease. Approximate one individual in every 15,000 million people worldwide have Wilson's disease.
Epilepsy is a condition that affects the brain and causes repeated seizures which are something referred to as an epileptic fit
Tonic Clonic seizures are the classic type of an epileptic seizure consisting of two phases called the Tonic phase and the Clonic phase. In the tonic phase the body becomes entire rigid, and in the clonic phase there is involuntary movements of your arms and legs. Tonic Clonic seizures may or may not be followed by an aura which is often followed by headache, confusion, and sleep. They may last mere seconds, or continue for several minutes. If a Tonic Clonic seizure does not resolve or if such seizures follow each other in rapid succession you should always seek emergency help.
Aura means a sensation perceived by a patient that leads a condition affecting the brain. An aura often occurs before a migraine or seizure. It may consist of flashing lights, a gleam of light, blurred vision, an odour, the feeling of a breeze, numbness, weakness or difficulty in speaking.
Learning difficulties is the same as learning disability. This affects the brains ability to receive and process information. Any individual with a learning disability has trouble performing specific types of skills or completing tasks if left to figure out themselves. It describes a group of disorders characteristic by inadequate development of specific academic languages and speech skills. About 1.5 million people in the United Kingdom have this disability.
I was at Great Ormond Street Hospital For Children in August 1993 when I was 12 years old. I stayed there in the children's ward as an Outpatient. This hospital is famous to treat sick children and is still today situated nearby Russell Square Underground Station which is on the Piccadilly Line.
Nobody knew what was wrong with me. Many consultants did so many tests and came to a conclusion that my diagnosis was having two main illnesses known as Wilson's disease and Epilepsy by undergoing several M.R.I. scans, blood tests, urine test and CT scans
M.R.I. stands for Magnetic Resonance Imaging. It is a type of scan that uses strong magnetic fields and radio waves to produce detailed images of the inside of the body. An MRI scanner is a large tube that contains powerful magnets. You lie inside the tube during the scan.
C.T. stands for Computerised Tomography. It is a type of scan than can produce detailed images of many structures inside the body, including the internal organs, blood vessels and bones. .
I had severe complications when I was undergoing several MRI scans to scan my brain. The MRI staff gave me a sedation to make me sleep during my scan but I didn't fall sleep I was wide awake. When the scan finished I tried to get up but I could not. I was paralysed from waist down meaning I could move my arms, my shoulders and my neck but could not move not my knees, my legs or even my toes. My parents wanted answers why I was paralysed from waist down from the MRI team but they told my parents that the sedation they gave me did not work.
My speech was deteriorating and salvia was gushing out from my mouth so they did more tests and discovered that I had another disability known as Learning Difficulties.
I was taken back to my ward. I was terrified and all the time crying. My parents took me in a wheelchair for lunch me to hospital restaurant as the food there was delicious, since the food served on the ward was disgusting.
While I was lying in my bed, I was thinking of how the sedation that went wrong and till today I do not have the answer.
I was scared staying in hospital most of time missing my family, relations but I was the lucky one I had my parents beside my hospital bed. I didn't know how to express my feelings to anyone. One thing came to my mind when I was there that ďI will start praying to God asking him to take all my illnesses and my disability away from bodyĒ.
Couple of months had gone past and I was still in Great Ormond Street Hospital For Children and I had physiotherapy to get my legs working again. She was a nice physiotherapist and she made me walk again. Thanks to her I was walking but still had my long term illnesses which would not go away. My parents were extremely happy that they could see me walk.
If it had not been for the female physiotherapist at Great Ormond Street Hospital For Children l I would still be in a wheelchair.
As I grew older I could understood my illnesses and disability more and I felt the need to research deeply to know others didn't know.
I attend Wilson's disease conference with my parents every year in June or July in United Kingdom. There are consultants, patients and pharmacists there. The last conference meeting was on Sunday 12th July 2015 at the Cambridge Rugby Football Club. Charlie Watsham was a Wilsonís Disease patient and my friend who suddenly passed away on Tuesday 11th August 2015.
Some of my relations, my cousins including my friends did not want to know me at all due to my illnesses and disability. The rest of my relations, my cousins, my close friends, my parents,my sister and my brother in law supported me every way that was necessary so I could get a full recovery.
I ask myself occasionally why I had to get these illnesses and live with a disability; the reason is it just happened. I was living a normal life before and then suddenly I have this long-term illnesses and disability.
Wiseworks is a local mental health pre-vocational work centre provided by the Disability Day Services of Harrow Council. For more than 20 years, the service has worked with people recovering from mental health problems by assessing their work skills, providing comprehensive work rehabilitation and arranging training at local colleges.
I have been attending Wiseworks since 13th May 2014 and I am much happier there because my friends and staff members treat me with dignity.
Overall everyone at Wiseworks understands my illnesses and disability they don't call me rude names like 'stupid' or ' thick'.
Wiseworks is like my home where I go to whenever I want to and I feel safe and happy there.
So what if I have Wilsonís disease, Epilepsy and learning difficulties nobody can cure me all I have to take various medications daily. I feel like a normal human being because others can see me of who I am but not what I have. I respect others and they give me respect back its like vice a versa basically.
My parents are always by my side which ever step I take even now.
Despite this, I could not have managed without both of their support and comfort through my illnesses and disability when I was severely sick in August 1993.
My autobiography explains about dignity in my road to success with my long term illnesses and disability.