News

FOR IMMEDIATE RELEASE: 04/20/19

Angela Braun 

(715) 370-1736

2nd Annual Meagan’s HOPE Memorial Walk and Roll

Ehlers Danlos syndromes Awareness & Suicide Prevention

Wausau, WI: On Saturday, May 4, 2019 at 1 PM EDS Wisconsin, Inc. and the Braun Family are hosting the Second Annual Meagan’s HOPE Memorial Walk and Roll for Ehlers Danlos syndromes Awareness & Suicide Prevention at Weston’s Kennedy Park. In its first year 186 people came to this event from across the country. The family hopes to double that number this year. The public and media are encouraged to attend. Prior to the walk, speeches will be done by Tammy Kosbab of EDS Wisconsin, Dr. Linda S. Bluestein, M.D. of Wisconsin Integrative Pain Specialists, Licensed Professional Counselor Trena Loomans of The Caring Tree Children’s Counseling Center, and others. A special announcement will be made prior to the one mile walk and roll.

Ehlers Danlos syndromes (EDS) are a group of heritable connective tissue disorders that impact individuals of all ages & genders. Frequently misdiagnosed as Fibromyalgia, Chronic Fatigue Syndrome, or various psychosomatic illnesses, EDS affects nearly every body system since connective tissue is what holds the body together like glue. Many of those who have EDS experience daily pain, excessive fatigue, increased bleeding, and they have overly flexible joints which can lead to joint dislocations, as well as many other seemingly unrelated symptoms. Support and resources for medical professionals and patients affected by EDS remains limited. Sadly, EDS frequently goes undiagnosed for many years causing patients and medical professionals unnecessary suffering. Diagnosis is validating and empowering for patients, their loved ones and medical professionals! Early diagnosis enables proper treatment strategies, fewer unnecessary medical visits, and prevents injury.

Born December 12, 1987, Meagan Rae Braun was a kind, caring, loving individual with a most beautiful, gentle soul. She grew up in Medford, WI and then resided in Weston. Meagan was an outstanding mother of two young children who truly enjoyed helping others while continually seeking knowledge, truth, peace and harmony. Even so, behind her beautiful smile, Meagan suffered with multisystemic illnesses including EDS, hyperadrenergic Postural Orthostatic Tachycardia Syndrome (hyperPOTS), allergies, sensitivities, and more. Frustrated with limited treatment options for her health, in addition to battling postpartum depression, Meagan lost all hope resulting in her death from suicide on April 24th, 2017. This annual event is held in honor of Meagan’s gracious spirit.

The mission of the not-for-profit organization EDS Wisconsin is to provide support and resources to Wisconsin patients and medical professionals about Ehlers-Danlos Syndromes and related conditions via education and research. Together with the Braun Family, this Walk is an opportunity to increase awareness, support, resources, and education for those affected by EDS and to prevent suicide. There will be t-shirts, lanyards, balloons and rock painting for participants.

This event is proudly supported and sponsored by Wisconsin Integrative Pain Specialists, The Caring Tree Children’s Counseling Center, Gray Law Firm, Chrysalis Massage & Consulting, Burkhardt Physical Therapy Center, Natalie Helen Photography, Black River Hemp Company, Evolve Counseling, Sport & Spine Physical Therapy, Tools of Marketing, and Mariah Liisa Design. We are fiscally sponsored by EDS Awareness aka Chronic Pain Partners.

Please join us at Weston’s Kennedy Park on Saturday, May 4, 2018. Registration begins at 11:30 am. Donations can be mailed to EDS Wisconsin, Inc. PO Box 485, Sun Prairie, WI 53590.

Sincerely, The Braun Family

 

 

THANK YOU TO THESE GENEROUS SPONSORS FOR BRINGING AWARENESS AND HOPE TO OUR COMMUNITY!

If you have a chronic pain condition, you probably know just how much work it is to exist. I read one of those internet memes the other day that had me thinking. It said something like,

“No, you’re wrong. I’m not faking being sick. I’m faking being well.”

It made me laugh for a second. If you have EDS and have ever parked in a handicapped parking space without needing a wheelchair, you have probably had at least one person tell you not to park there. I have been accused by multiple people of seeking attention or pretending things are worse than they really are.

After I laughed, though, I started crying. You see, my pain has been absolutely out of control lately. I started a new job just under two months ago and my doctors and I already decided I can’t physically handle it. I have pushed myself every single day to get to my office and do my work, smiling and greeting people through pain, all the while my medications getting less and less effective and my wheelchair becoming more and more necessary. I used to come home after work at night and be able to enjoy myself. Now, less than six months in to my marriage, I find myself coming home from work and wanting to do nothing but lay in bed and watch TV because my body hurts so much. I work primarily in an office. I sit primarily behind a desk. Most people who see my at my job would never even guess that I get home and often choke back tears asking my husband to work knots out of my muscles and then cry as he has to push on the really painful spots because that’s the only way to get rid of them.

I quit my job. It broke my heart. I am not someone who quits a job after two months, but I know I cannot do it and I need to accept that, but I am still overcome with guilt thinking of what inconvenience I have caused others. I am someone guilty of measuring my value by my productivity and I do not feel productive.

I was back home over this past weekend for a family funeral. We lost a wonderful man. It was absolutely devastating–and the first time my extended family really saw me in my wheelchair. It was the first time my parents saw what happens to me after a full day of activity now. It was the first time people close to me realized how truly exhausting it is just to exist in a body that doesn’t work right. Between the emotional and physical pain, I am still tired almost a week later.

Why am I writing this post that seems like me just whining about how hard it’s been to be me lately (even though I promise you I actually do like being me)?

Because it can be lonely here and it should not have to be.

I am making a conscious choice to share these massive struggles with you, because I’ve read the struggles of others lately and I do not want them to feel alone. I want to remind the world that just because someone has pretty makeup on and a cute outfit doesn’t mean they aren’t in incredible pain–in fact, that makeup and clothing might be their best effort to hide it. I want the others who are currently in pain that feels out of control to know there are others who are laying in bed wishing they could go do something and feeling guilty for holding others back.

I am 28 years old and I cried on my mother’s lap this weekend about wishing I had a normal body.

Kids with EDS feel that way, too. They need to know it’s okay to feel that way sometimes. They need to know not to live there. They need to know sadness and grief over their condition is natural, but isolation is dangerous. They need to cry to a parent or a friend instead of hiding their pain until they cannot bear it anymore. We lose chronic pain patients to suicide because their mental health becomes too great a burden as they wish and hope for a “normal body” and have no outlet for those emotions.

I have made many mistakes in the last few months. I have overlooked the struggles of others while enduring my own. We must all work to see pain in ourselves and pain in others. We must avoid the loneliness and isolation of chronic pain and chronic illness. We must allow our emotions to have an outlet before they take control. When you lose another thing in your life because of this crappy condition, you are allowed to be angry. You are allowed to be sad. Your life, though, it is still beautiful. You are still wonderful. I think you will find in recognizing others’ pain, you may find relief and comfort for yours.

I may not be able to do the jobs I hoped I could do. I had dreams I can no longer achieve due to my physical limitations, but I also have new dreams I wouldn’t have if I didn’t have EDS. I’m going to work on those for a while. I’m going to remind myself of all the beautiful people in the world who don’t care if I look pretty and say I hurt; they believe me anyway (and want to know the name of my eyeshadow palette so they can look pretty through the pain, too).

Remember: I am here. We are here. Stay here.

Together we are stronger!