The People Behind The organization - EDS Canada

"The people behind the Foundation - Ehlers-Danlos Syndrome Canada

We were lucky enough to have a conversation with Kathleen Eubanks, President and co-founder of Ehlers-Danlos Syndrome Canada.

Ehlers-Danlos Syndrome Canada provides services and resources to people with EDS and their families, promotes advocacy and awareness, helps bridge between the patient community and the medical community to foster research and offers support both for newly diagnosed and people with long standing diagnosis and their families. Ms. Eubanks talked with us about the importance of having a support system, what she would tell individuals and families struggling with a new EDS diagnosis, and the most challenging (and rewarding) parts of her work. Yael

Why is it important for people living with to have a strong support system, both inside and outside the family?

The Ehlers-Danlos Syndrome(s) is a rare and poorly understood genetic condition, and as such people diagnosed with EDS can feel very isolated. This is one reason it is crucial for people with The Ehlers-Danlos Syndromes to have a strong support system. It is not uncommon for individuals with the EDS to be misunderstood and support groups can provide reassurance that what they are experiencing is real.

Unfortunately, due to the fact that the EDS is uncommon and relatively unknown chronic genetic condition, it is not uncommon for non-specialists or even family members to not understand and recognize that what the patient is experiencing is real, painful and debilitating. In this regard, a formal diagnosis can really help the individual be validated both medically and with family and friends. In fact, the clinical diagnosis is often the first step an individual makes towards a support system, where they begin to learn not only how to better help themselves but also how to strengthen the support system itself. By reaching out to others through support groups such as ours, either in person or online, helps individuals and families feels supported and less alone.

Support groups also play a critical role in this by streamlining how an individual navigates the system, which saves time, resources, and much needed energy.

What is something you would tell families of children who have been recently diagnosed with EDS (or any chronic condition)?

Receiving any diagnosis for your child can be overwhelming, and having a resource for parents to discuss their experiences can be invaluable. It is very important for parents of a recently diagnosed child NOT to have to navigate the various complexities of the educational, medical and government systems in alone. By joining local chapters of a national support group, the individuals can receive support and useful information from others in their area that already have experienced, and thus avoid overlap or pitfalls in the systems along the journey. With the help of these online and in person communities, families can also be more quickly connected to supportive medical professionals that understand our particular rare disease (EDS), and work together to find the best evidence based medical care currently available for them and their children.

What can they do to better prepare for life after an EDS diagnosis?

One can never really prepare for living with an EDS diagnosis because of the unpredictable nature of the condition. Dislocations, pain, autonomic nervous system dysfunction and a myriad of other co-morbidities that may or may not be present in any given individual with The Ehlers-Danlos Syndromes daily. This can make day to day life very unpredictable, and require a personalized approach to treatment and condition management. Having said that, knowledge and information on how to best manage our medical condition can be very helpful going forward.

Part of the current management for patients is to learn specific coping strategies - such as mindful meditation and cognitive behavioral therapy(CBT). For some patients, these strategies can help significantly with their individual daily challenges. Keeping our bodies as healthy as possible through light exercise, healthy eating, physiotherapy, medication(s) and so forth can also be paramount for life with EDS.

On the other hand, though, one also must recognize that some high impact activities would not be recommended for individuals, as they could have pronounced and perhaps progressive consequences later in life. So proper education relating to your own or your childs individual case is a good starting point in preparation for life with an EDS diagnosis. It is important for newly diagnosed people to know that living with EDS will have many days, weeks and even months that will be extremely difficult and frustrating to live with but, knowing you have support and caring people there who understand and listen really does help. You will get through the rough patches and come out stronger.

What is your foundations most used resource? Medical advice/Research participation/ Financial aid?

Our organizations most used resources would be our private online support groups, and our internal peer to peer referral system. We created regional groups across Canada in 2009, and these groups have been exemplary in uniting the EDS communities regionally across the country. People seem to really enjoy the privacy it offers and the feeling that there is a soft place to land within the group when things are tough.

People report they feel they can discuss issues in the group that they otherwise couldnt, with people who totally understand what theyre going through. Our work has also enabled people to meet, and form their own local groups for person to person meet-ups. We continue to work hard to engage the different communities on projects within their regions to keep spreading awareness, and increase the knowledge of The Ehlers-Danlos Syndromes both medically and legislatively.

Our Board Of Directors continues to meet with clinicians, researchers and other medical professionals to foster new partnerships, patient engagement for projects, knowledge transfer within the communities, and changes that will ultimately help individuals and families affected by EDS. The international Ehlers-Danlos Society recently released new EDS Criteria and eighteen internationally scientific publications dealing with the new classifications that have spawned much excitement in our community. These new changes will likely impact the way some people are diagnosed and managed, and organizations like ours that help disseminate this information can be very helpful in keeping everyone updated on current events. For us specifically, there are many ways to connect with EDS Canada! Aside from our in person support groups, we also have an official face book page and website for people who are not face book subscribers. This readily allows individuals or other groups to follow us, connect and receive updated information, and ask questions.

Has technology changed the way people are connecting with each other and sharing information about EDS management? How is your foundation putting new technology to work?

Yes definitely, technology has changed the way rare disease communities can connect and organize. It can be wonderful, as technology has allowed access to a wealth of information, but it can also have a down side as alternative facts can also be found on the net. Many sites do provide bona fide evidence-based facts, one always must be aware that web content may present unsubstantiated and perhaps worrisome opinions as well. Always discuss any potential treatments with a health care professional specialized in your condtion(s).

What do you consider to be the most profound/inspiring part of your work?

EDS Canada has a long-held belief that helping just one person feel more understood or less alone can make a huge difference. This really does make our job worthwhile. Seeing people connect, finding friendships, and being witness to that Ah-Ha! you get that too?! moment is very satisfying.

Anything else youd like to share about your experience?

Building an organization is hard work, but building one with individuals who all suffer with this challenging condition is even harder. It is important for people to understand that regardless of the organizations size, everyone has an important role in rare disease organizations. That can mean volunteering, participating whenever possible, and donating however or whatever one can to ensure continued viability of organizations such as ours. In the rare disease realm, funding is as rare as the rare disease condition itself! In our experience, nothing can replace actual face to face interpersonal meetings though. Often EDSers find that by making an effort and meeting in person makes a world of difference, and involving family and friends whenever possible is not only fun, informative, and helpful, but can also be positive to their own well-being. So remember to Engage, Support and come on out to meetings and event in local area. Were all in this together.

Ehlers-Danlos Syndrome Canada Mission/Vision Statement

Ehlers-Danlos Syndrome Canada provides knowledge, advocacy and support to individuals and their families living with The Ehlers-Danlos Syndromes.

Vision

Strives to be a bridge between patients and care providers; offering informative, purposeful medical resources for patients and the medical community.

Provides a confidential supportive environment to develop lasting friendships within the community.

Unites EDSers by providing peer to peer, online, regional community support groups and social events.

Works to cultivate change for the EDS community coast to coast.

Builds a network to empower individuals in the various regions across Canada.

Engages policy makers to affect change for the optimal quality health care for Canadians with EDS

Kathleen Eubanks

President and co founder

Ehlers-Danlos Syndrome Canada.

www.ehlers-danlossyndromecanada.org

Email :info@ehlers-danlossyndromecanada.org