My name is John and I have NMO.
Is that all you need to know about me? No, not at all. My NMO is an important factor in my life, but it doesn’t tell you who I am.
I’m a retired English Teacher. I am fascinated by words, and by Literature, by the richness and variety of the English Language, and by how our Languages and Dialects are the defining core of who we are. If you want to know me, talk to me – don’t rely on a blood sample.
I’m a grandparent. I love to spend time with my two little tiddlers, Thomas, 7, and Jessica, 6. We play, we learn together, we visit all sorts of interesting places where we can share the excitement of growing up – though I’m fighting to delay it for all 3 of us!
I aspire to be a musician. I have played guitar and performed in Pub Bands for most of my life. Although my NMO has kept me from performing for some years, I still write and record my own Blues-influenced compositions. Because my ability to play guitar has diminished, I’ve turned to the Blues Harp (as the 10-hole Diatonic Harmonica is popularly known) as a way of inflicting my musical ideas on an unsuspecting world. I have just finished recording my third album and would like to use my music to help with fund-raising for NMO research.
There’s a lot more I could write about myself without focusing on the fact that I have a rare auto-immune disease. Does it slow me down? Yes. Does it stop me from running around with my grandchildren? Yes. Has it given me a variety of unexpected problems to cope with? Yes. Will it stop me from fulfilling my ambition to write a book? Definitely not.
Want to know me? Talk to me. Listen to my songs. Read my ramblings. Forget the walking stick.
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…..