A Condition Rarely Understood
What is YOPD?
Parkinson’s is not just one disease and it is not a disease exclusive to the elderly, it can happen to people of any age. Young onset Parkinson’s (YOPD) is an umbrella term that refers to those diagnosed with Parkinson’s under the age of 50. Confirmed figures are hard to come by due to YOPD either being misdiagnosed or going undiagnosed, but YOPD is thought to account for around 10% of all Parkinson’s cases. In the UK that would suggest 14,500 of us are living with YOPD.
YOPDers are diagnosed at a stage in their life where they have greater demands than those whose onset is later. They are often in the middle of building a career, a family and financial security which can make the impact far larger than those whose onset is later. YOPDers often experience significantly different symptoms (such as frozen shoulder, clawing of toes, depression and insomnia), disease progression and are more likely to have a genetic predisposition to the condition.
Who are we?
The ‘go to’ charity for those with Young Onset Parkinson’s Disease (sometimes known as Early Onset Parkinson’s Disease)
Spotlight YOPD was registered as a charity in January 2016. Our name is also our ‘mission’ – to shine a light on the largely hidden rare conditions classed as Young Onset Parkinson’s. Parkinson’s is not one disease and there is not one single solution. We are realistic in believing before we expect cures, we need to identify causes for the various types of Parkinson’s. As a charity with a global influence and reach, Spotlight YOPD is keen to share knowledge, putting equal weight on scientific research and patient experience. We would also like to see more emphasis on preventative measures as well as a more holistic approach to helping people live better with the condition today. A personalised approach is required, enabling YOPDers to make the best decisions for themselves, their family, and their future. We believe in the power of partnerships and the patient voice. The YOPD community holds the key to a different approach.
In recent years, we have seen YOPD approach a tipping point… New YOPD charities from around the globe have appeared and are now singing from the same hymnsheet, if in their own language. We have lots we can learn from each other and much we can share. The best we will link to on this site.
Only now are patients and researchers working together in properly observing and trying to track disease progression, identifying presenting symptoms, discovering genetic links and much more.
Founded and still run by people with the condition, Spotlight’s aim has always been in the first instance to represent those people diagnosed with Parkinson’s under the age of 50. We hope to help them understand what YOPD is, how it and its many and varied symptoms may impact on their health, welfare and the future for them and their family.
While hope is very much the currency of YOPD and the power of positivity is undeniable – we seek to tell it like it is. No promises and no timelines for a ‘cure’ – we are all on a learning curve, including clinicians, neurologists, patients, partners and charities. We want to encourage patient involvement and different, creative approaches to solving the many issues that make up YOPD.
The five rights listed below extend to all people living with YOPD worldwide. These rights will ensure that people living with YOPD have the power to make informed decisions about their own care and needs. All people living with YOPD are entitled to these basic rights so that they can achieve optimal quality of life and dignity in living.
- People with YOPD have the right to an early diagnosis and information. This includes:early access to a physician who is informed about YOPD
· an accurate and early diagnosis, delivered sensitively
- timely and appropriate access to information, at all stages of their condition2. People with YOPD have the right to access quality care and treatments. This includes:
· access to support and care services managed by a professional who has experience with YOPD
· educated advice about personal care and equipment, clinical interventions, treatments and therapies
- People with YOPD have the right to be treated as individuals and with dignity and respect. This includes:
- being offered a personal care plan to specify what care and support they need
· being offered support to help them make informed medical choices to meet their personal needs
· opportunities to be involved in research including genome sequencing
4. People with YOPD have the right to maximise their quality of life. This includes:
· timely and appropriate access to equipment, home/work adaptations, wheelchairs, and suitable housing
· timely and appropriate access to disability benefits
5. Carers of people with YOPD have the right to be valued, respected, listened to and well supported. This includes:
· access to support and counselling, such as respite care and psychological support
· having their needs assessed as carers and as individuals
· access to appropriate benefits and entitlements