Patient groups can change the world

Pekka Simula 05.06.2017

You contract a chronic disease, get diagnosed, end up with a life-long relationship with a physician for the best available treatments. You are in the hands of professionals. What would you need a patient support or patient advocacy group for?

A lot!

Peer support provided by patient groups is immensely valuable for many. Just knowing you are not alone can make a world of a difference. Practical advice from “senior patients” can be as valuable as the formal medical support; it may help cope with symptoms and educate family members and other caregivers. One can learn of diets, exercise, and other activities that have helped others. That kind of ‘therapies’ are typically not scientifically proven so you cannot expect your physician to recommend them; yet it can make a huge improvement to someone’s quality of life. The list goes on, depending on the disease.

Examples set by other patients can also help realize that the diagnosis is not the end of the world. For instance having Parkinson’s disease (PD), an incurable and progressive brain disease, can initially seem like too much to handle. Learning of how other patients go on with their lives, continue working, even keep up tougher activities and hobbies such as sailing can be very encouraging.

General awareness is a very important area where patient organizations play a huge role. For instance some diseases cause symptoms that can be mistaken for inappropriate behavior (Tourette’s syndrome), being drunk (Ataxia), always looking mad or serious (“Parkinson Mask”), etc. We cannot expect everyone to identify every such case; but it would be nice if most people had at least heard of the disease. It makes a huge difference to the apologetic patient who explains they have Tourette’s if the response is “Oh dear, I’m so sorry to hear that!” instead of an angry look and “Yeah, right.” Patient advocacies are the best and often the only groups who educate the public on many practical aspects of diseases.

Awareness can also support earlier diagnosis, as patients know they should seek help when symptoms appear. For instance, do you know the symptoms of Lymphedema (LE)? LE awareness is still generally quite poor. This chronic, disfiguring, disabling swelling is often understated as a “cosmetic issue” even by healthcare professionals though it significantly impacts quality of life and may lead to severe complications. LE also provides a great example of an active patient organization making a huge difference: LE&RN, Lymphatic Education & Research Network, recently convinced the U.S. Senate to declare Lymphedema Awareness Day. This immediately helps countless patients who didn’t even realize they had LE and were just ashamed of their horribly swollen limb.

Yet another important role for patient groups is supporting research in their field, both by direct contributions and indirectly through government bodies and other sources. Hollywood superstar Kathy Bates is one of the strong persons behind LE&RN, herself an LE victim who bravely speaks about her disease, encourages others by her example, and educates decision-makers on the gaps in LE research funding. Another Hollywood superstar, Michael J. Fox started the Michael J. Fox Foundation, which is now the most important source of Parkinson’s research funding in the world.

Tom Isaacs was only 27 when diagnosed with PD. He then devoted his life to fighting the disease, not just for himself but for every patient; and he co-founded The Cure Parkinson’s Trust, a charity aiming at finding a cure to PD. Sadly, he did not live see that dream come true; he passed away in May 2017. Together with others he was, despite his serious illness, able to create something that is already making and will continue to make a huge impact on the lives of countless other patients after him.

Let’s remain inspired by the amazing work of Tom Isaacs and others. The best way to honor their memory is to keep up that work. If you are a patient please consider joining a support group; if you want to help people with some disease please consider supporting a relevant patient organization. And if you cannot find a patient group in your area why not found one? Tom Isaacs was not a superstar when he was diagnosed with PD. That didn’t stop him from changing the world for the better.

Every voice counts. Our diseases are best fought together.

Herantis is currently a member of two patient advocacies: The European Parkinson’s Disease Association EPDA, and Lymphatic Education & Research Network, LE&RN.