PANS and PANDAS are conditions causing inflammation in the brain resulting in neuro-psychiatric symptoms such as OCD, tics, eating disorders and anxiety along with many more. More commonly affecting children, these conditions can be isolating and life changing. PANS PANDAS UK's mission is to ensure speedy diagnosis and effective treatment for sufferers by educating the medical community as well as offering support to sufferers and their families.For more information please see our website www.panspandas.org.uk

Nigel Tweed, 41 from West Sussex is taking on the massive Endure 24 for PANS PANDAS UK.

For many years Nigel has been a keen runner. However, on the 18th of June, after having run his first 26.2 miles with another 78.6 to go, he might be a little less keen.

Nigel has set himself this challenge for awareness and fundraising purposes, but also to endure the 'fight with everything you have and being pushed to the limit' experience, he is looking to put himself through this struggle for 24 hours, as a token of respect to an incredibly resilient group, those who suffer from PANS and PANDAS.

Not long after meeting his wife Samara, she became very unwell. After a relatively normal childhood, at 19 years old everything changed for Samara following a flu-like illness. The years that followed were challenging enough, with severe migraines, anxiety, insomnia, fatigue, blurred vision, self harm, skin rashes and repeated infections, however things took a turn for the worse when Samara turned 22. Within a few days there were OCD behaviors in nearly every movement. This appeared alongside eating restrictions, severe cognitive and memory decline and motor and sensory abnormalities.

Samara's OCD was tic-related in nature, full of repetitive movements. Over time symptoms changed with more cognitive decline, that lead her to 'get stuck', unable to process as usual, symptoms were most severe in the home environment and interfered with walking, sitting, eating, drinking, reading, writing and much more. Strangely enough, doing nothing was impossible so there was rarely a break from the torment. These years of cruel suffering resulted in 2 suicide attempts. Being alive was brutal and none of the conventional treatments for OCD helped and it didn't look like it could ever get better.

After 15 years had gone by, improvement came with one medication and a lovely therapist. We discovered PANS, which is a neuro-psychiatric condition, triggered by a misdirected immune response resulting in inflammation of the brain and that Samara ticked nearly every symptom. Samara is currently undergoing the diagnosis process. 

As for many, due to misdiagnosis, potential straight-forward treatment comes often too late. Not enough research has been done so far and if it has, it tends to be focused on children with the conditions. But without effective treatment, a sick child does not magically recover when they turn 18. Adult onset of the condition is also seen and PANS affects adults in the same way as it affects children.

Samara comments. “I am unsure how Nigel has coped over the years. It wasn't my fault I became so sick, but it was extremely hard on him too. It isn't only the sufferer who could end up with post traumatic stress, but also the caregiver helplessly watching the individual rapidly deteriorate so severely. 15 years is a long time to have been stolen by this illness and Nigel could have had a far easier time for sure. I like to add, we are very grateful for the crucial support we also have received over the years from family and friends”.

In the last year and a half Samara has seen improvements. Symptoms are less frequent on an anti-inflammatory diet and the support from the PANS community has been a great help. The hope that was lacking for so many years, is back and there's a big appreciation for the smallest things in life.

We hope to raise awareness, so more of us recognise the symptoms and hope to raise funds for future research and treatment development.

Nigel has spent many months training to give this challenge his very best, he comments “Although keen, I'm just the average runner, I had not covered distances further than a marathon till March 2022, when training for this challenge. I'm under no illusions as to how tough this challenge will be, I fully respect the distance of 1 marathon (26.2 miles) which is tough enough on it's own, on completion of my previous marathon in Rotterdam 2018 I was shattered, with little more to give. To add another 3 marathons within a set time is going to be incredibly difficult. Samara's illness has been a 15 year long marathon of not giving up, but this is not a rare experience. Thousands of children and adults all over the UK with these conditions are barely coping with little or no help available. These people, along with my wife, are my heroes. This is why I set myself this ambitious goal of running 4 marathons in a row, to raise awareness and support for those affected by PANS and PANDAS”.

We hope that the running conditions are not too harsh and that we are able to raise much needed awareness and funds. Your donation will be very much appreciated and feel free to come along in person and support us at the event! Unfortunately spectators can't turn up on the day, this needs to be pre booked on the Reading Endure website.

Whether Nigel succeeds or not, he does so knowing that he has the luxury of giving up if his body refuses to go any further. For many sufferers of PANS/PANDAS this is not the case. They have to run that marathon, every single day.

Endure 24 Reading 2022 - target 4 marathons (104.8 miles/168.6km)