Trish’s Story (Founder of NMO-UK Research)
It is always important to understand how sufferers feel and we must always keep that uppermost in our minds, but I would like to tell my story as a Mother of a sufferer.
It all started on Christmas Day 2004 with a supposed stomach bug, Kirsty was 14 years old, I booked an appointment at our family doctors and a stomach bug was diagnosed. Although we followed our doctors instructions things did not improve so it was back to the Doctors, Kirsty’s blood was tested but nothing showed up. At this point Kirsty was starting to get tired very easily and falling asleep in school, so once again it was back to the Doctors. I was told to keep her off school and let her sleep it off; it was the Virus taking its toll.
On the 31st March 2004 I picked her from school, we were travelling behind a bus when Kirsty said she could not read the number plate, it was all blurred and double. That was it I drove straight to Alder Hey Children’s hospital. By the time we got there parts of her body had become numb and her vision was deteriorating, to me it looked like she had suffered a stroke. A scan, that night showed some inflammation on the Brain. I was told they didn’t know what it was and it needed more investigating. Kirsty was put on Steroids. It was horrible to see my baby suffering and feeling so helpless, after all I’m a mum and we make our children feel better.
They following Morning we were sitting at her bed when 5 Doctors approached and asked if they could have a private chat, I knew the news was not good. They told me and her Dad that they thought it was a Brain Tumour; I went to bits this couldn’t be happening. They thought Kirsty should know but I insisted they were not telling her after all how do you tell your baby that news? I couldn’t approach her bed without the tears flowing down my face and did not want her to see the concern in my face. Her Dad knew he had to be the stronger and went straight to her. When I composed myself and approached her she asked “what’s wrong mum why have you been crying am I going to die”, it was heart breaking. I am so glad we did not tell her what their thoughts were as the following day once again the doctors approached, this time it was good news it was not a tumour but still they were not sure what it was.
After numerous tests including a Lumbar Puncture, they diagnosed ADEM (Acute Disseminated Encephalomyelitis) I must admit we were all pleased it was not a Tumour. I felt that we could deal with anything now. Me, her Dad and older sister Emma spent weeks in hospital taking turns to stay overnight with her. I have to say that for my family, as we lived local to the hospital, we coped with the obvious issues of fitting in work and day to day life but for those who live further afield I can only imagine the distress and hardship suffered by them. This is yet another reason, in a long list, why this charity and support campaign is necessary.
The Steroids eventually took affect and after several weeks in Hospital, we were finally discharged.
Then the following year more or less to the exact date, we were back at Alder Hey with a second episode. I’m a need to know person and I knew you could not get ADEM twice, I also knew that it was very similar to MS. The new Diagnosis was MS.
Kirsty was nearly 16 now and in the grand scheme of things, technically an adult so was transferred for treatment at the Walton Centre. Dr Boggild was Kirsty’s MS Neurologist, along with the MS Nurses, Kerry Mutch being one of them. So treatment was started. Rebif was the first drug but didn’t work. Next it was Mitox which kept Kirsty symptom free for 2 years. At the end of that, ever so brief period of calm there was yet another relapse. This time capaxone was once again prescribed, it didn’t work. Then we got the supposed Miracle Drug Tysabri, Kirsty was still receiving Tysabri when yet another relapse, But this time within 24 hours she lost the sight in one eye and the next day both eyes were affected. I would like to mention at this point that Kerry her MS Nurse (who we had grew close to) had informed us a couple of months prior that she was leaving us and was going to work within NMO. Little did we all know that we would be, shortly, following her? This was when we met Anu Jacobs the NMO specialist and he explained what they thought was happening this time. It was all knew to me, I had never heard of this Disease. Subsequent treatments showed that prescribed steroids had hardly any effect so next it was a Plasma Exchange. It was not a nice procedure but thank God it worked and Kirsty regained her sight after 8 weeks. It was a horrible time for all of us. Kirsty was discharged a few weeks before her 21st Birthday and was able to go away to the Dominican Republic with her boyfriend to celebrate it.
So now the new Diagnosis was NMO. We were told also that the MS drugs had made the NMO worse. I searched the Web to find out more on this cruel Disease and must admit I came across some scary sites. I then came across a Facebook group which was a worldwide NMO group. I found this to be a great way of communicating with people who understood, gave support and knowledge. This prompted me to start up a UK Facebook group, to see how many people had been diagnosed in the UK. We now have 125 members.
Right from the start Kirsty has not wanted to read or know about her illness, after all she was only 14 when it all began and I understand her reasons. Kirsty is 24 this year and living a stable life with her partner.
NMO is very rare disease hence not a lot of people, even in the Medical Sector, know of it. We need more Awareness and funds to research in to this cruel disease. This was the driving force and the main reason why this Charity has been a dream of mine for many years. It is overwhelming to finally be here…..
My name is Annabelle Moult, I was born on the 5th August 1982, and I live with my Husband in Buckinghamshire UK.
In 2007 on the 3rd September I woke up in the morning with a very bad headache and blurred vision (I initially thought I had a very bad vino hangover!!). The day carried on and I started to get really painful pins and needles in my legs, so I kept having scolding hot baths as this seemed to ease the pain. Danny (my Hubby) took me to see the Harmony Doctors at the Hospital, I was told I might be Anaemic and to go home and rest as I was going to the Doctors in the morning.
I went home and to bed, in the middle of the night I got up to go to the bathroom and collapsed. I realised that my legs were not doing anything and I could not move or get up, so shouted for Danny, saying something was wrong and we needed to get to the hospital. He had to pick me up off the floor and carry me to the car and into AandE.
At the Hospital I was made to sit on a hard trolley for hours before someone saw me, by this time I was paralysed from my chest down and my vision was decreasing rapidly. The Doctors could not work out what was wrong with me. Over the upcoming days and weeks I had MRI Scans, Lumber Punctures, Plasma Exchange, so much blood taken every day all my veins collapsed. I was put on a very high dose of steroids for the first week to help bring down the swelling that was happening in the legions in my brain.
3 days after being in hospital I woke up and the world was black. I was blind.
I was initially at Stoke Mandeville hospital but it was decided I be moved to The John Radcliffe in Oxford due to the high standard of their Neurological Care. I was in hospital for nearly 6 months, they were unsure of what was wrong with me and due to how quickly my illness came on they informed my family that it did not look hopeful and I would more than likely never get better or out of there.
The JR were magnificent, I had Doctors around me all day every day trying to work out what had happened and why.
Luckily I was allowed to have someone (Danny, my Mum or a family member) with me all day every day, this enabled to keep some normality to my life, even if it was just someone getting me up and helping me to wash and dress. I initially dropped down to 6 stone and was so frail and unstable I could not even put my own hair up or brush my teeth. But when I was finally able to do these every day tasks I had taken for granted previously, it was a real sense of achievement.
After approximately 6weeks of blindness I started to see shapes in the black, my eye sight continued to improve seeing black on black, then grey shadows and misty, and pixelated vision.
It was a miracle my eye sight was coming back but then I started to get spasms in my left arm and this became paralysed for a couple of weeks, now 3 limbs down and blindness, it was what one might say ‘an emotional roller coaster’.
After 4 or so months in the JR they had seen improvements and felt it best to send me to Stoke Mandeville Spinal Ward so that I could be taught how to live my life in a wheelchair. Having been such an active person prior to falling ill, playing hockey, rugby, horse riding, going to the gym numerous times a week, it was going to be a hard transition but something that I have adapted my life to learn to live with.
I did physio every day, wheelchair skills and general everyday activities to learn how to best live life in a wheelchair and being registered blind/severely visually impaired. I left hospital at the end of Feb 2008 at nearly 17stone (due to the steroids).
I have always tried to maintain a sense of humour and never ask ‘why me’ in my eyes why should it not be me?
Within days of leaving the hospital, I had got myself back to work; after such a long time of being institutionalised in the four walls of the hospital I needed to get my brain back in gear and focusing on other things. My Company have been great in supporting me throughout my illness. They have made the offices accessible for me to get around and I have a large screen with magnifying software to ensure I can see what I am doing and working on. I left hospital at the end of Feb on a Friday and was back in work by the Monday!! Mad you may think, but it kept me sane. I was back to work 3 days a week for the first 6 months, just to ease me in, I was also very tiered all of the time, so I had to be careful that being back did not take me back to square one by relapsing. By the September I was back full time and have been ever since. Just because life has changed does not mean it has to stop,.
Friends and Family
I have found that it is vital to keep positive people around and unfortunately when times get hard you find out who your friends and family really are, I have lost friends through this and also pushed people away, but it has made those that stuck around even closer. My friends and family have been amazing and I could not have got to where I am now without their help, love and support. They really all are and have been amazing.
It took 2 years before I was Diagnosed with Devics/NMO, so for that time until my diagnosis I felt like an alien, I did not know what was wrong with me, I had no idea what to do or what to read to help me understand my illness and I could not find a person in a similar situation to talk to. It was a 2-year battle and quite a lonely place to be, but once I was diagnosed it was easier to deal with and be able to have information to help understand what was going on inside of my body. I was able to start helping myself to get better.
I have tried so many different diets, I have tried physio, I have tried alternative medicines and therapies, and some of them I feel have worked, some I have had to walk away from!! But one day something will be found to ease the every day nerve pain I am in, build back the Mylein Sheath that has broken down around my nerves to stop the connection between my brain, eyes and legs. The unfortunate thing is that NMO is such a rare illness that there is not the awareness or the money for research.
They say NMO is incurable, but I say Never say never, one day my illness will go and I will see and walk again.