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Stories from this county…

Worcestershire

Trish’s Story (Founder of NMO-UK Research)

trishIt 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…..

Rob’s & Alison’s Story

alison2Alison and I were no strangers to coping with adversity through ill-health, when things changed profoundly for us at the start of 2013.

In the past we had previously managed to get through Alison’s second encounter with Hodgkin’s Lymphoma, involving chemo and radiotherapy, plus issues with bulging discs in her back from degenerative disc disease which had left her in constant pain and with limited mobility.

After all that, things were looking ‘rosy’ again. Alison was back to working full time and, after being made redundant at the back end of 2011, I too was enjoying working part-time for once.

Christmas 2012 seemed to be a turning point.  Alison brought home a cough and cold from work, which she kindly shared with me – once again we were ill over Christmas and unable to fully enjoy any festivities!

If we thought that was bad worse was yet to come. I’ll summarise the main points as a lot was about to happen in a short space of time:

  • New Year 2013, and after a week or so of normal activity at work, Alison complained of general fatigue and feeling nauseous.  Anti-emetic prescription.  This didn’t work.
  • Vomiting and intractable hiccups followed for three weeks or so, resulting in a 3-stone weight loss, despite various medications.
  • Collapsed and was admitted to outpatients to see if any medications could help her hold down some food, and finally managed to get the sickness under control.
  • Current medical opinion up until this point was that it had been viral.  Even though the extreme tiredness and heavy limbs continued, we thought it might be some kind of post-viral fatigue.
  • February arrived and still not able to eat properly.
  • Vision became a problem in her left eye, with pixillation or blurriness occurring, which resulted in an emergency visit to Eye Casualty.
  • Optic Neuritis.  After further tests and a visit to the neurologist it was indicated to us that this may be MS (Multiple Sclerosis).
  • Sensation loss in April creating numbness from her toes up to her chest…  Back to the doctor who diagnosed Transverse Myelitis and got Alison an immediate referral to Neurology.
  • Admitted as an inpatient for 3 weeks and put on steroid drips as they were finally now suspecting Neuromyelitis Optica (NMO).  This was confirmed with a blood test, and further scans, though no lumbar puncture due to her previous back surgery.
  • The timeline to get to this point was January to the very start of April, just 3 whole months!

While Alison was in Hospital I struggled to find answers.  I found a friendly NMO aka Devic’s Disease group on Facebook that put me into contact with practitioners that were specialists in the field of this rare autoimmune neurological condition.  This was immensely helpful.  Being a scientist myself I understood the condition, but having a simplified explanation from a specialist nurse helped me convey the seriousness of the condition to relatives and friends.  It was a very worrying few months waiting for the medications to take effect and limit the aggressiveness of the disease.  I think today we are in a better place, but the condition is constantly monitored by the medics and unlike cancers the treatment is not finite.  It may continue for many months to come, possibly years, as I have not heard of anyone going into any form of ‘remission’ or reversal.  NMO patients, it seems, live with this disabling condition for the rest of their lives with some small improvements along the way.

As you might imagine our lives are now turned upside down yet again, and our plans for the future have changed due to Alison’s limited mobility and vision.  I never renewed my job contract in the New Year, instead having to claim JSA and look for work that would allow me to care for Alison at home too.  I am now getting back to working part-time again after 6 months.

One of the big challenges after being released from hospital was our home.  No downstairs facilities meant that we have had some temporary modifications made to help Alison access the property and facilities.  We are now awaiting on a Disabled Facilities Grant to make further changes to our home.  By the time that is done a year is likely to have passed.  We were able to qualify for council assistance, and now have some help from some lovely carers who cannot be praised highly enough for what they do for us, alleviating some of the pressure of day-to-day living with NMO.

Other hurdles that we have had to jump have been working out how we can get assistance both financially, and practically.  There is no handbook that you get given on becoming a victim to such disabling neurological conditions: you have to navigate the minefield of forms, websites, telephone calls and applications yourselves whilst battling with the physical and emotional effects of the disease.  It’s a very stressful time for all patients with NMO – indeed any disabling condition – you sometimes wish there was an advocate  or ‘fairy god mother’ that could do all the paperwork and calls for you so that you could just concentrate on caring and helping your loved one to get better.

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