The Importance of Belonging When A Rare Disease Affects Your Family.

8 We all crave a sense of belonging in our life. Belonging is the human emotional need to be an accepted member of a group. Whether it is family, friends, co-workers, a religion, or something else, people tend to have an inherent desire to belong and be an important part of something greater than themselves.   Such a simple word for a huge concept. A sense of belonging is a human need, just like the need for food and shelter. Feeling that you belong is most important in seeing value in life and in coping with intensely painful emotions. What happens when your world is turned upside down by a rare disease? And suddenly, you are alone. You have moved outside of the group you were comfortably in and into a new unknown group.

This is what brought Rachel and Kim together in January of 2016, their need for community and a sense of belonging to a group of families that totally understood the surreality of Acute Necrotizing Encephalopathy (ANE), an ultra rare disease.

In the last few months,  they’ve received quite few messages similar to theses ones:

..for months, years…I blinded myself on the true meaning of ANE as I have always come across negativity of this disease. I was always on fear, so I have just surrendered everything to my faith. My son was diagnosed with ANE when he was 13 months old and we are still in the rehabilitation stage. He is now turning 4 but I have seen a huge difference in him. from a hard stone body with limpy neck, now he can control his neck and only the right arm and leg are quite spastic. because I’ve seen improvement I now have the courage to face ANE. I have longed to have a community who I can turn to…I hope our family could belong here and may we learn from each other.

 

“I’m excited to join and be a part of an extraordinary community. It’s been nine years of hell from when my son first was afflicted with ANE as it was called then back in 2007 and now he specifically falls into the ANEC category. It’s been a frightening and isolating and lonely journey having a child afflicted by such a wry very very rare condition but more so by a condition of which almost nothing is known. I’ve spent the last nine years researching and finally two years ago emerged from this surreal place. My focus turned from trying to find out what causes ANEC and why my son has been struck with this illness to developing mechanisms and protocols to manage his condition and treat his condition and take him from a devastating condition of vegetative state to where he is now”

 

Their small facebook support group started in April of 2016 from about 12 members and today, Aug 31st 2018, the community as grown to 136 members. They’ve worked hard over the last 20 months to build this supportive community by reaching out into the isolating world of the families affected by ANE to bring them into the folds of the ANE community.

This past July, they launched their first awareness campaign trying to reach into the medical community to bring interest in research and a better understanding of this ultra rare disease that was first thought to be of Japanese origin. The last decade has baffled the medical community as ANE keeps appearing in all corners of the world.  It affects people from all cultures, from the depths of Finland to a little Maori girl in New Zealand; all the different states in the US, Australia, India, the Netherlands and in South Africa. Furthermore, it has been labeled as a childhood disease typically occurring between 18 months to 4 years but these statistics seems to be changing as our medical technology and education gets better at recognising the disease.

They hope that one day, their ANE community will be actually able to meet so they can continue build the connection between the members. “We have found meetups and discussion with other families in the same situation to be VERY helpful and uplifting..” says Jared, father of two ANE survivors.

You can learn more about Acute Necrotizing Encephalopathy at www.aneinternational.org 

on Social Media:

FB: https://www.facebook.com/ANEInternational/

Twitter:  https://twitter.com/aneinternationa

LinkedIN:  www.linkedin.com/in/ane-international

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