Neurofibromatosis Aware Day – 17th May 2019

Shine a Light on Neurofibromatosis returns for 2019

Nerve Tumours UK as recently announced the popular Shine a Light Campaign for World Neurofibromatosis (NF) Aware Day on 17^th May 2019.

The Campaign has now been running for several years, which was started by an American charity Children’s Tumor Foundation and Nerve Tumours UK has been very happy to help coordinate the UK and European collaborations for the past four years.

On 17^th May 2019, Ionic buildings and landmarks around the world will show their solidarity with those affected by supporting the ‘Shine a Light on Neurofibromatosis’ campaign and lighting up in blue on the day.  In 2018, more than 205 buildings and landmarks took place across the globe. Many of these were in Europe and every county in the UK was represented. The worldwide total is almost doubled that of the previous year, which shows how the campaign’s success and reach is growing.

Williamsons Solicitors would like to spread awareness of this campaign. Please follow the link below to see how you can get involved: –

https://nervetumours.org.uk/images/downloads/Press_Release_WNAD19.pdf

Neurofibromatosis (NF): –

NF is one of the world’s most common neurogenetic conditions and the most common neurological disorder caused by a single gene mutation. The condition can cause large tumours to form on the nerve endings, which can be very disfiguring and painful, and can interfere with crucial neurological pathways. These tumours are usually inoperable and can sometimes be fatal. NF affects more than 25,400 individuals in the UK alone.

Williamsons Solicitors are currently investigating a claim for Mr and Mrs K, on behalf of their 3 year old son, Master R, who is thought to be one of Britain’s youngest stroke victims following a diagnosis of NF. Master R was diagnosed with NF at the young age of 8 months old. No treatment or further investigations were considered necessary at the time of diagnosis and Master R was referred for monitoring of the NF on a non-urgent basis. Master R was diagnosed with NF in February 2017. In December 2017, Mr and Mrs K started to notice issues with Master R’s vision. They noticed that, when he was playing with his toys, he needed to bring them closer to his face and he was also bumping into things.

It was arranged for Master R to see a GP in December 2017. On attendance, no concern for the earlier diagnosis of NF or consideration of any potential link between the condition and the visual issues were given. Following this appointment, Master R was given an appointment for 8 February 2018 for further investigations into his symptoms at the local hospital.

Whilst awaiting the appointment, Master R’s symptoms persisted and on 2 February 2018, Mr and Mrs K were concerned by the Master R’s condition and behaviour and suspected that he had suffered a stroke. He was laid flat on his back crying quietly and on checking, he was unable to raise his arms or legs or crawl. An ambulance was called and he was conveyed to the local hospital.

On arrival, he underwent a CT scan which identified a black mass on Master’s R’s brain and he was transferred urgently for further investigations, namely an MRI scan.

The MRI scan confirmed that the Master R had an optic nerve glioma (slow-growing brain tumor). It was subsequently confirmed that Master R had suffered a stroke as a result of the tumour.

Master R has since undergone multiple operations. He has also undergone extensive chemotherapy with weekly sessions of a period of approximately 1 year. The prognosis at present is unknown Mr and Mrs R have confirmed that they have recently been advised that the glioma has reduced in size.

In respect of Master R’s current condition, he appears to have lost his vision in both eyes, although it is suspected that there may be some residual limited vision. Also, due to the stroke, Master R now has various neurological issues, including issues with motor control. He has involuntary movements of his limbs and is unable to sit unaided or crawl.

Mr and Mrs K would like to raise awareness of NF and to make others aware of the tell-tale signs of this rare disorder.

What are the early signs of NF Type 1?

The early signs of NF1 are café au lait spots (flat brown birthmarks) on the skin, freckles in unusual places, and neurofibromas (growths) on the skin. One third of people with NF1 will have one or more medical complication during their lifetime.

Although this is a rare disorder, Williamsons Solicitors believe that there may be other patients out there young or old, that are living with NF and who are struggling to deal with their treatment. Our expert medical negligence solicitors have a wealth of experience on dealing with misdiagnosis claims.    If you would like to speak to one of our experienced Solicitors, please contact Williamsons on 01482 323697.

To read more about NF please visit the Nerve Tumours UK website.