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YOPD is a very complex condition – a syndrome, in fact – where symptoms vary and change over time. Anyone visiting this site is likely to have been diagnosed with Parkinson under the age of 50.
3D effects on YOPD
We invite views and questions from anyone in the YOPD community who has experience of depression, dyskinesia or dystonia.

 

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The charity for those with YOPD run by those with YOPD*

  *Young Onset Parkinson’s Disease diagnosed in those under 50

Our vision is that YOPD will have universal recognition to counter the stigma and better address the specifics of a younger Parkinson’s diagnosis.

Our five key aims working towards this vision are:

1. To have YOPD recognised globally by those diagnosed, their families, clinicians, researchers, pharma and the general public as a separate rare syndrome – with many cases being genetic.

2. To promote whole genome analysis of all those with YOPD in the hope of identifying both type and cause of condition – enabling the sharing of knowledge on likely symptoms, side effects and most effective treatments, according to the type.

3. To campaign politically and plug the gaps socially – helping those with YOPD gain access to not only treatments but also the benefits and support required whether emotional, practical or financial.

4. To have YOPD understood as a long-term condition – with emphasis on a holistic approach to exercise, diet, counselling, better treatment options and support – in order to produce dedicated NICE guidelines, outlining specific symptoms, treatment and life challenges.

5. To accelerate diagnosis and give those diagnosed, and those around them, the strength and support to take control of their own condition.

 

 

 

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YOPD – A Complex Condition

Parkinson’s is a very complex condition – a syndrome, in fact – where symptoms vary and change over time. Anyone visiting this site is likely to have been diagnosed with Parkinson under the age of 50. You actually have YOPD – Young Onset Parkinson’s – and, as the name suggests, you are not too young.  Anyone looking to increase their knowledge of YOPD is welcome to the site and invited to get in touch. However we write, in the first instance, for our core audience – those with YOPD. To the person with YOPD: No doubt, while going through diagnosis you would have been told on several occasions that ‘it won’t be Parkinson – you’re far too young’. Having learned the news that you do in fact have PD, you will have been similarly told ‘You’re very young to have Parkinson’s’. You don’t have traditional Parkinson’s, you are too young. You, along with 6,500 others approx, in the UK alone – many under the radar, some misdiagnosed, others undiagnosed – have YOPD, Young onset Parkinson’s. Some types of the condition under the YOPD umbrella could have a genetic link. Together the various types of YOPD have separate rare disease status, along with significantly different symptoms and very different challenges. And – if you’re aged 21 – 50, you are exactly the right age to get the onset of YOPD. Presenting symptoms vary but there are a few that we come across time and again, often recognised in hindsight following diagnosis, which for YOPD on average takes almost a year and a half. Please note – this in no way constitutes medical advice and is not intended as a diagnostic guide. Frozen shoulder is commonly reported but rarely picked up on as an early indicator. Insomnia, anxiety and depression figure large on the non-motor side. If there’s a tremor, it tends to be stress or excitement induced, not the usual ‘resting tremor’. Clawing of toes is often reported, this painful cramping is dystonia and is usually only seen in YOPDers. The medical profession are more familiar with dystonia as a side-effect of the meds. YOPD has many facets, many dimensions but there are three – all beginning with D –  that are highlighted by Orphanet as points of difference, specific to Young Onset. A side effect rather than a symptom – dyskinesia delivers the third dimension. Induced by levodopa and common in YOPDers within five to ten years of diagnosis, it can be mild or manic. To the outside world these out-of -control movements are the most dramatic experience of any Parkinson’s ‘symptom’. To the insider suffering these ‘side effects’ it compounds the feeling of stigma and embarrassment – sending many back behind closed doors.

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