News

A HUGE thank you to all of our donors, it is because of you that we are able to achieve our mission of providing support and resources to doctors and patients throughout Wisconsin in 2018. 

To date, we have created six support groups throughout Wisconsin; further, we’ve provided resource materials to many doctors and patients in need and were able to provide grant monies to two teens to attend a pain conference. Additionally, we held a very successful Meagan’s Walk for EDS Awareness and Suicide Prevention, traveled to Chicago as EDS panelists for medical students, began working on a leadership program with national organizations, made lots of connections between patients and providers, and have many exciting events currently being planned. 

It is EDS Wisconsin’s greatest honor and pleasure to thank each and every one of you from the bottom of our hearts on behalf of everyone who either has EDS or has been affected by EDS!

Together we are making a difference. Thank you!

  • Advanced Tele-Genetic Counseling

  • Aspirus Family Medicine

  • Chrysalis Massage

  • Concrete Creations of Wisconsin, Inc

  • Culver’s of Rhinelander

  • Digicopy

  • EDS Awareness

  • Fishing Hot Spots

  • Original Pancake House

  • People’s State Bank

  • Prevention Genetics

  • Priority Physical Therapy

  • Silver Ring Splint

  • Soleil Beads

  • The Caring Tree Children’s Center

  • Tools of Marketing

  • University of Wisconsin School of Medicine

  • Wisconsin Integrative Pain Specialists

     

  • Al

  • Alan

  • Alex Bluestein

  • Alex Debosky

  • Alex McElroy

  • Alisha Kraus

  • Alison Pharo

  • Alyssa Rock

  • Amy Rohweder

  • Andee Dunn

  • Andrea

  • Andrew Willits

  • Angela Braun

  • Ashley Brede

  • Ashtin Palms

  • Ayden Lindeman

  • Becca Dunn

  • Beth Wroblewski

  • Betty Braun

  • Bill Vander Pas

  • Bob Grant

  • Bobbi Jo Toy of

  • Brad

  • Brenda Zimmerman

  • Brendan Harder

  • Brian Artz

  • Brian Moberg Jr

  • Brian Moberg Sr

  • Brian Withers

  • Bridget Boucher

  • Brooke/Jessica Moberg

  • Bruce Schoenherr

  • Casey Braun

  • Cathy Paulson

  • Cayden Knudsen

  • Cheryl Ming

  • Christina Zaleski

  • Christine Berndt Beth

  • Christine Berndt

  • Christopher Zaremba

  • CJ Dunn

  • Clark Brunner

  • Cody Knudsen

  • Colton Artz

  • Connor Zblewski

  • Corina

  • Cory Kesy

  • Cory Sankey

  • Dan Boardman

  • Dan Denson

  • Dan Lautenschlager

  • Danielle Behnke

  • Darla Pitzke

  • Dave McKay

  • Dave Wallace

  • David Armstrong

  • David Moberg

  • David Olive

  • David Rock

  • Dawn Dembosky

  • Deb Klecker

  • Dee

  • Delaney Olsen

  • Derek Durante

  • Diane Durante

  • Don Moxley

  • Dr. Juan Dong, MD, P,hD

  • Dr. Linda S. Bluestein, MD

  • Duane Braun

  • Elizabeth Pritts

  • Emily Ramthun

  • Emma Whitman

  • Erin Hanson

  • Erin Lavery

  • Fran

  • Gina Anstutz

  • Greg Lavery

  • Heather

  • Heather Palms

  • Heidi

  • Heidi Ashenbrenner

  • Hilary Campfield

  • Jacci Vesely

  • Jackson

  • Jamie Gausman

  • Janell Armstrong

  • Janie Rustick Ruth Stoffel

  • Jason Coffey

  • Jason Lindeman

  • Jen

  • Jen Withers

  • Jeremy Braun

  • Jessi Dunn

  • Jessica Pack

  • Jessika Jamgochian

  • Jill

  • Jill

  • Jill Warner

  • Joe Heideman

  • Joe Klecker

  • Joe Olson

  • Johanna Young

  • John Beach

  • John Ferman

  • John Maniaci

  • John Prendota

  • John Schneck

  • Johnny

  • Jolaine Braun

  • Jordan Dahl Dan

  • Jorge

  • Josh Hanson

  • Joshua Coffey

  • Judy Houston

  • Judy Newton

  • Julia Donel

  • Kaede Brux Chase

  • Kailee Knudsen

  • Karen Moberg

  • Karla Klade

  • Katelyn Ramthun

  • Katelyn Stoffel

  • Katie Cichosz

  • Katie Wallace

  • Katie Young

  • KC Graveen

  • Kendra Hilman

  • Kendra Neilson Myles

  • Kevin Moberg

  • Kia Braun

  • Kim Brunner

  • Kim Kostka McKay

  • Kourtnee McDonald

  • Kris Denzine

  • Kylin Hughart

  • Laura Konapacki

  • Laura Pisciotti

  • Leah Sanson

  • Levi Pitzke

  • Linda Bluestein

  • Linda Ramthun

  • Logan Artz

  • Lori Kunstman

  • Lori Schoenherr

  • Madeline Moberg

  • Maria Gianakopoulous

  • Mariah Liisa Holterman

  • Marie Heideman

  • Mark Houston

  • Mary

  • Mary Beth Lewison

  • Mary Moberg

  • Mary Young

  • Matt Bender

  • Max Morines

  • Megan Dassow

  • Megan/Rhett Schmidt

  • Melinda Swanson

  • Melissa Prendota

  • Micheline Beattie

  • Michele (Tammy Mail) Stevens

  • Michelle Moberg

  • Mike

  • Mike Ruenger

  • Miriah Graff

  • Misty Grau

  • Misty Hunter

  • Misty Hunter-Poehnelt

  • Naomi Klockziem

  • Nathan Vander Pas

  • Nickky Wise

  • Olivia Pitzke

  • Patty Grove

  • Paula Whitman

  • Penny Swanson

  • Perry Frank

  • Rachel Reed

  • Robbylee Ryan

  • Ryan Durante

  • Ryan Madden

  • Saige Trottman-Huiet

  • Samantha DeWitt

  • Samantha Saylerslee

  • Sandy Studinger

  • Scott Williamson

  • Serena Denson

  • Seth Ming

  • Shelly Van De Weerd

  • Sherry Hughart

  • Sherry McGinnis and family

  • Sierra Haizel

  • Skyler Zblewski

  • Stefanie

  • Stefanie Jackson

  • Stephanie Goettl

  • Stephanie Goettl (not duplicate)

  • Steve Swierczynski

  • Steven Miles

  • Sue Patnaudre

  • Susan Frank

  • Sydney Zimmerman

  • Tabitha McKay

  • Tami Bansemer

  • Tammy Kosbab

  • Tatumn Palms

  • KC

  • Tiffany Fischer

  • Tim Studinger

  • Tina Garnick

  • Tom Young

  • Tony Studinger

  • Tosha Moxley

  • Travis

  • Trena L and family

  • Trena Loomans, LPC

  • Tsilos Schoener

  • Wael

Racing Hearts Day 5k Trail Run/Walk proceeds will benefit programs, education and research efforts at Aurora Medical Center Grafton’s Dysautonomia Center. Help us raise awareness for this “silent” disease, and fund new research. More information here.



I know it has been a LONG time since I’ve written here, but for good reason. I got MARRIED! Despite having a double ear infection AND tonsillitis on top of all the joy that is EDS, marrying the person who has proven to be the greatest possible teammate in this battle against chronic illness was truly the most incredible day of my life. I really needed to take some time to enjoy the wedding and honeymoon and get back in to our lives before I could start to write again, but now, I need to write here because a few things have been happening I think folks who follow EDS Wisconsin can understand.

Despite being happier and more emotionally stable than I have ever been, my body has not been. I had some additional tests run earlier this summer on my legs that did not exactly give me the answers I wanted to hear. Then, I followed up with my doctor and asked what had been on my mind more than anything. I really haven’t been able to get around all that well. Using my crutches and cane hurt my spine. When I don’t use them, it hurts my legs. My doctor said something to me that’s stuck with me. She said, “I think you already know the answer to this, but you just need me to say it to you because I’m a doctor and it won’t be true until you hear it.” I’ve known I need a wheelchair when things are bad for a really long time, and despite writing here and often offering advice to you all, I do not exactly take it all that well.

The next week, I was responsible. I followed up with my psychologist. We talked about how it felt. We talked about what it meant. We talked about dealing with the social ramifications of being a wheelchair user who is not completely immobile. We talked about the tremendous difference it makes in my mind to have the wheelchair instead of the crutches or the cane–especially when I already don’t use them as much as I should. Then, came the insurance company asking me if it was even medically necessary to have one. At that moment, I knew, for the first time, I had to come to terms with my reality. I cannot stay in the workforce if I do not have a wheelchair to help me. I simply do not have the strength or pain capacity to handle what it is doing to me to work on my feet.

I had a wheelchair in my garage. It was an extra chair that isn’t exactly fitted right and certainly not a long-term solution. I kept it there, gathering cobwebs just in case of emergency. I kept it there because I worried I would need it someday. It had been almost a month and because insurance is complicated, I still hadn’t been approved for my own chair–but working had just gotten to the point I couldn’t do it anymore. SO, I didn’t what I never thought I would. I cleared off the cobwebs on the chair. I got a memory foam seat cushion and a bag for the back of it to carry the things I need for a day. Then, I took it to work, where I work with college students every single day. These young people can be unforgiving, judgmental, and challenging.

Here’s what happened: nothing. Nobody said anything at all. It didn’t cause me any problems socially. I was able to get through a day of work with much less pain than I normally do. My staff helped clear things out of the way to make our office more accessible. The college students I see every day didn’t see me any differently than ever before. Neither my staff nor my boss thought I was less valuable than before. I got home at the end of that first day in tears because I was so mad at myself for not doing it sooner.

I can’t say I’ve had this experience everywhere. In truth, older people struggle more with my disability than my generation. I don’t know if they always know how to handle that I look young and healthy when I’m not. They’re often the ones who make comments to me about handicap parking spaces or my decision to use a scooter in a grocery store even though I know people will look at me funny. I wish I had a chance to sit down with every person who did this to me and explain to them the 13 full years of my life I hurt this much and didn’t actually know why. I wish I could tell them about the surgeries I had in high school that were supposed to “fix” my legs but never did. I wish I could tell them that my high school threatened not to let me graduate because I couldn’t take a traditional gym class and wouldn’t let me march with my marching band because I was in a wheelchair from my surgeries–even though I sat first chair in the band and music was my favorite part of my education. I wish I could tell them that even though they might be judging me or assuming I’m not disabled, I am going to continue being as visible as I can for all the kids who are still out there who don’t know what is happening to them–and who might, right now, not be with their marching band, either.

I resent when people say you can do anything you set your mind to–or that if you just believe enough in yourself you can achieve anything. That’s not true. Limits do exist–and that’s OKAY. Accepting my limits is not easy–and society telling me not to is unhealthy. I believe in myself and my ability to be successful, but I also know I need a wheelchair sometimes and that my body has limits able-bodied people my age don’t understand. Life isn’t an inspirational poster all the time. Sometimes, it’s about taking the hard stuff and seeing the good in it. It’s about seeing how the bad things that happened because it took a long time to learn about your EDS–those things are now the ways you’re helping other people. I’ll take that over winning a marathon every day.

image of backpack and pineapple

Brain mast cells link the immune system to anxiety-like behavior 

Though I now understand a lot more about mast cells and their impact upon my body and mind, I find myself pondering those 40 something years that I was in the dark. It’s honestly a miracle that I’ve come as far as I have without more consequence. 

It is my sincere hope that sharing this information will help others become more aware of the impacts that unstable mast cells and histamines can have on the body and mind.

Find the article here: 

A published 2008 Article by the National Academy of Sciences


I met an AMAZING young lady several months ago–and before you worry, I did ask permission to write this blog before I wrote it–and I’m grateful to have the opportunity to be able to share with all of you about this experience. I think it’s almost as valuable to all of you as it has been for me.

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In the few times we’ve met, I’ve been struck by a few things:

She and I have had many conversations and most of them aren’t even a little bit about EDS.

We’ve talked about Taylor Swift and nail polish and what it’s like to go from middle school to high school.

We’ve talked about watching our puppies grow up.

We’ve laughed about how the oldest sister is clearly the best sister.

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Why am I writing about her today, though? I didn’t realize until today that she isn’t just a kid with EDS who likes me because I like Taylor Swift and hanging out with her. She’s me. She’s me if I had the chance to go back and meet myself when I was 14. She’s me if my mom met a doctor who could have told me what was going on with my body. She’s me if I had a support group to attend and doctors to assist me and parents who knew how to fight for my accommodations at school.

You would never guess if you met me today that when I was 14, I was shy. I was quiet. I wasn’t at all sure who I was going to be. I didn’t know at all where I was going in life.

I remember being in middle school and the pain that went along with it. My body hurt every single day. It hurt a lot more that kids thought I was faking it. It hurt more when they told me in gym class that I was “lucky” I’d sprained another joint. It hurt in high school when they laughed about me needing to leave class early because the elevator was so far away from all the classrooms that I needed extra time to get there. They pushed their way past me in in my wheelchair during a fire drill to such a point I wondered if I would die in the event of an actual fire while all the mean girls escaped with their lip gloss still intact. I had a few really close friends I loved more than anything–and a lot of kids who would never understand no matter how many times I tried to explain.

I never knew an adult with my condition when I was 14. I didn’t even know what my condition was–but I certainly didn’t know how I was ever going to escape from those hallways with my pride still intact. I was afraid to be there. I wish I had known some. I wish I’d met someone. I wish they’d come up to me to talk to me about Taylor Swift and tell me the mean girls read their blog now (because they do).

This young woman is smart, funny, and beautiful–in order of importance. She is in the time of life when I was most struggling. She is in the time of life when I found I most needed words from others.

It’s funny, though, because I’m 27 now. I’m an adult. I’ve known what’s “going on with my body” for more than two years and the first time her mom told me that talking to me was enjoyable for her, I think it helped me more than it helped her. I think it was better for me that I had someone to walk with me at an EDS Awareness Walk who wanted to talk about Taylor Swift and puppies when my fiance couldn’t be there with me.  Nothing I have accomplished in my life matters more to me than making a difference in the lives of young people who have EDS–and what I have found is that they actually make an even bigger difference in my life than I could ever make in theirs.

I hope she remembers for the rest of her days, even when EDS and its related conditions are dictating what she can do in a given day or even what she can physically do in a given lifetime, it doesn’t dictate for a second what she can do with her heart and her mind with every day on this earth. I hope she knows that sharing a smile and a laugh with her made my day and my life better. I hope she knows that she was the person I most wanted to see today–and that I was saving some Taylor videos on my phone just for her. I hope she finds her voice the same way I did but that I will be here to be a sounding board every time she needs one while she’s still growing up.

Someone said today, “middle school is hard enough without all of this.” It was the truest and most painful thing I had heard in a long time. I would never wish EDS on every person who knows me, but I will use all of the words I can write to help them understand. It’s not as effective on 10-18 year olds, but that’s why we have to find our younger selves and love them the way we needed someone to love on us. We need to support them the way we needed someone to support us. We need to let them speak and write and LISTEN to them as much as they need.

Then, when you hear later that the time you spent made a difference in their lives, I promise you, it will help you even more than it helped them. Finding your young self is rewarding. Showing your young self shared interests and friendship is some of the best medicine there is.

Be your own friend. Be it today.

I haven’t written here for a while because truthfully I haven’t been up to it. I’ve always been someone who finds a lot of comfort in working hard and my doctors forced me to take a medical leave because we can’t control my pain. So, I’m on week two of a four week leave from my job. Now, instead of spending my days working and contributing to my office—I’m spending my days on the couch and taking extra naps with my dog. This gives me a lot of time to think and ponder—and I’ll be getting to those ponderings VERY SOON. But first,

Taylor Swift (I know, I have a one track mind, but hear me out) has a lyric that says “Wish you could go back and tell yourself what you know now.” It’s about thinking you’re in love when you’re in high school and the decisions you make around that love.

In my life, though, it’s more about wishing I could go back and scream into my own ears “ASK YOUR DOCTOR ABOUT EDS; TELL HIM THIS IS WHAT YOU HAVE. TELL HIM NOT TO CUT YOU OPEN UNTIL HE FIGURES THIS OUT. MAKE HIM STOP.”

Today, I had a doctor’s appointment, so I had to leave to drive to see my doctor to discuss things. The specifics of what happened aren’t important. What is important, though, is when we got to a part of our discussion when he said, “This is something that should have been done for you at least fifteen years ago. This is a series of tests that should have been done for someone with this sort of condition at least by your early teens. We would have known then. We could have done more.”

It’s been a little over two years since my diagnosis and this is probably the fifth or sixth time a doctor has been this blunt about the nature of a need my body has. Not understanding what was happening in my body for so many years means that we did not get the treatments I could have had. We did not see the doctors I could have seen. My mother did not know. She could not ask the questions. She could not help. I call these situations the “Should’ves, Would’ves, but Didn’ts.”

It goes something like this: We should have (should’ve) done <insert medical concept here> for you. It would have (would’ve) allowed us to <insert medical result here>. Unfortunately, we did not (didn’t) know of your diagnosis at the time, so we must now follow through with <insert updated version of medical concept here>.  Voila! A formula for Should’ves, Would’ves, but Didn’ts!

I don’t know when you get over them, but I do know they continue to affect EDS patients for a long time. I do know they play a critical role in the damage to our bodies for longer than we like to admit.

I’m not a doctor. I can’t give medical advice. I won’t give medical advice.

I will tell you these things, however.

If you are NOT in the EDS community:

  • If you have ever wondered why it is that I speak and write and share so much about my health—it is because all I seek to do every single day is prevent another 27 year old from wondering what her life would be like if those tests had been run when she was 12.
  • Sometimes we need extra support at doctor’s and after them. If we ask for you to join us, please do. Other times, we really prefer to go alone. Please respect that.ves

If you are in the EDS community:

  • It’s okay to need time to process that you DIDN’T have those things done for you before. I am a FIRM BELIEVER in crying in the car after the doctor. I BLAST Swift and cry on the road from Madison to Whitewater so often you’ve probably heard me at some point on I-90.
  • Once you have a diagnosis, you have a responsibility to work for the answers you need. You have to learn to be your own advocate. You can’t expect doctors to just KNOW what you need if you don’t tell them.
  • The best way to prevent future “Should’ves, Would’ves, but Didn’ts” is to get educated. EDS usually is like this fun game that includes a bunch more diagnoses. They don’t always have the time to teach you everything in a single appointment. Educate yourself. Seek out resources. Speak with others in the community. ASK QUESTIONS.

Just like Taylor wished and couldn’t, you also can’t go back and tell yourself what you know now. You can make sure you’re seeking out every single opportunity in your present. Come to our support groups. Read our blogs. Become our friends. Ask us questions. Let us help you. We promise that’s what we want to do. We promise we won’t judge your situation—ever.

You aren’t alone–we promise!

 

 

 

Introduction to mast cells and MCAS

Hey everyone, it’s Sam again! I reached out to you guys via the Facebook community a few weeks ago and got a few requests for information on mast cells and MCAS. I personally don’t have MCAS, so it’s not something I research as intently, but I LOVE immunology and thought this would be a really fun thing to talk about.

Immunology can be a scary subject, even for biologists. It’s very detail-oriented, there are a LOT of things going on, and the scientific community still doesn’t understand a lot about how the players in the immune system work. We do know that the immune system interacts with other parts of the body, like the nervous system (neuroimmunology recently crossed my radar and I’m enthralled!), to cause some interesting effects, so immunology is becoming a hotter and hotter topic for research.


The big player in MCAS is, as the name implies, the mast cell. To understand MCAS, we need to break down what mast cells are and what they do.

These guys are mast cells:

They have a bunch of receptors on their cell surface that let them talk to other cells in the body and receive input from both other cells and the environment they’re in. All those dark purple circles you see in the image above are called granules. Many different cell types have granules in them, and they can hold different types of chemicals (often called cytokines or chemokines) depending on what the cell needs to do. Mast cells usually have granules full of histamine, but they can also hold enzymes that chop up proteins (proteases), neurotransmitters like serotonin, and a bunch of other types of chemical messengers and enzymes. Histamine is the compound we usually talk about when discussing mast cells and allergy, and it makes a lot of different things happen depending on where it’s released.

So….what exactly does histamine do? There are 4 main histamine receptors in the body, and when they’re activated, each one can cause different things to happen. Some are more common in different parts of the body, which is why histamine can trigger different kinds of reactions. From typical seasonal allergy-type reactions or skin irritation to GI symptoms, to nervous system effects like nausea and vertigo, and even anaphylaxis, histamine can trigger a wide range of symptoms which is why MCAS can be difficult to diagnose. Many signs can be relatively benign or nonspecific, but when typical allergy testing comes up negative, it may be time to investigate MCAS.

Keep in mind that the other chemicals mast cells release can cause other things to happen, too. It’s not all about histamine!


So how are mast cells activated? Mast cells have cell surface receptors that can bind allergens, specific classes of antibodies, and signals sent out by other immune cells. When activated, mast cells release their granules, which then break open and release their contents into the local environment and trigger other events to happen.

It isn’t fully understood why mast cells don’t behave normally in MCAS. It’s important to note that MCAS is not the same as mastocytosis, which is characterized by an abnormally high number of mast cells; in mast cell activation syndrome, mast cells are activated too easily and are releasing their contents in situations they typically wouldn’t. Some environmental triggers can stimulate mast cells, like excessive heat or cold, sunlight, mechanical irritation, and chemicals or products on skin. There’s an observed correlation between MCAS, POTS, and EDS that isn’t fully understood.

MCAS is a very involved disorder, and it would take significantly more than just one post to do it justice. Hopefully this quick overview was helpful! Don’t hesitate to reach out to me via the EDS, Wisconsin Inc. contact page, or on the EDS & Joint Hypermobility Wisconsin Facebook page if you have anything in particular you’d like for me to discuss in detail.


*Disclaimer: I am not a physician, and I am not qualified to give anyone advice about their medical condition. All posts written by me are strictly meant to inform and empower patients and medical professionals alike, with the information they can use to better communicate with each other. If you have questions about your condition, please ask your doctor.


Citations:

  • Mast cell secretory granules: armed for battle. Wernersson S, Pejler G. 2014. Nature Reviews Immunology. 14: 478-494.
  • Mast cell activation syndrome: a review. Frieri M, Patel R, Celestin J. 2012. Current Allergy and Asthma Reports. 13(1): 27-32.
  • https://tmsforacure.org
  • http://www.mastcellaware.com
  • Mast cell activation syndromes. Akin C. 2017. Allergy and Clinical Immunology. 140(2): 349-355.
  • Misbehaving Mast Cells in POTS and Other Forms of Dysautonomia – https://vimeo.com/246313546 (I didn’t actually watch this, but thought it would be a great resource!)

 

Have you heard the news?

Prevention Genetics and Advanced Tele-Genetic Counseling (ATGC) joined us at our latest event, Meagan’s Walk for EDS Awareness and Suicide Prevention and shared in announcing our amazing news.

EDS Wisconsin, Inc. has worked to make genetic testing more accessible, through telephone counseling and self-administered testing.  This can eliminate the long wait, often years, many people face trying to get an appointment and testing with a geneticist.

In honor of the latest news, we’ve created a resource page specifically for genetics resources that we’ll be updating as more information becomes available.

Check it out, share, and don’t forget to print your referral form below!

 

Like, share, and comment!

We can’t wait to hear your reactions!

CHANGE THEIR WORLD. CHANGE YOURS. THIS CHANGES EVERYTHING.