The Sunflower Conversations

The Sunflower Conversations podcast - Vascular Ehlers Danlos Syndrome with Erica Baldwin

December 05, 2021 Hidden Disabilities Sunflower
The Sunflower Conversations
The Sunflower Conversations podcast - Vascular Ehlers Danlos Syndrome with Erica Baldwin
Show Notes Transcript

The Sunflower Conversations podcast - Vascular Ehlers Danlos Syndrome  with Erica Baldwin
Erica has Vascular Ehlers Danlos Syndrome (VEDS) – a genetic condition which wasn’t diagnosed until adulthood.

In this conversation we hear how the VEDS affects her body, in particular her internal organs, which caused her to have a major ruptured colon.

During childbirth Erica’s body struggled to cope and she explains how that led to obtaining a diagnosis. Despite the affect to her mental health, physical health and work life Erica is positive and an absolute pleasure to talk to.

If you are experiencing problems discussed in this podcast contact your GP or Primary Care Provider if based in the US.

 For support



Hosted by Chantal Boyle and Lynn Smith, Hidden Disabilities Sunflower.

Want to share your story? email conversations@hiddendisabilitiesstore.com

Chantal Boyle:

Joining me today is my colleague, Lynn Smith, who works for Hidden Disabilities Sunflower based in the U.S. How are you today, Lynn?

Lynn Smith:

Very good. Thank you, Chantal.

Chantal Boyle:

Great to see you as always. And our guest today on the Sunflower stories is Erica Baldwin, also based in America. Hi, Erica. How are you?

Erica Baldwin:

Hi, Chantal. Hi, Lynn. Thank you all for having me. I am doing well. Thank you.

Chantal Boyle:

Can you please tell us whereabouts you are and bit about yourself?

Erica Baldwin:

Sure. Well, I'm originally from the Midwest, so I don't have a Southern accent, but we do live in the South. We live in North Carolina, and I live with my husband of almost 19 years and our almost 10-year-old son.

Chantal Boyle:

What are your interests?

Erica Baldwin:

Well, I love to write. I kind of do that as a hobby and also as a part-time freelance writer. I do that. That was my career before my disability. I love the fall in the U.S. and the south, and so the weather's perfect to me, 50, 60 degrees. So I like walks and bike rides with my family.

Chantal Boyle:

Can we ask about what your health conditions are and how long you've had them?

Erica Baldwin:

Well, I have a genetic condition called vascular Ehlers-Danlos syndrome. It's a connective tissue disorder. And it's genetic, so I've had it since birth, but I was not diagnosed until age 33. There were signs kind of all along, but a lot of times with this type of illness, this diagnosis, you don't know unless one of your parents is diagnosed or you have some event that triggers some investigation. It has to be confirmed by genetic workup and blood work. And so the basic explanation of it as the building blocks of my body are missing a protein, and so that means my insides are like wet paper bag or Kleenex. And that includes my arteries, my vascular system, and the major hollow organs like my colon and intestines.

Chantal Boyle:

How does that manifest for you in your body?

Erica Baldwin:

On a big scale, the first major sign was a ruptured colon when I was 20 years old. Started out as a stomach ache. I was in college, had no idea what it was. It was the worst stomach ache I've ever had. I went to a hospital, a local small hospital, and they misdiagnosed it, because they just saw fluid on the stomach and thought it was a ruptured cyst, which usually works itself out with some pain meds. And so I was sent back to college and my mom came up. She lived a couple hours away and was like, something's not right. Took me to a hospital near my home. And they found that my colon had ruptured and my body was going septic. It was shutting down by that point. And so that was the first signs of anything. There were little signs, my whole life.

            I bruise very easily. I have very thin skin and visible veins in my chest. There's certain facial features that are associated with it, large eyes and small nose and small chin. Six months of my life, so then I was 20 years old and we had no idea what was happening, because Ehlers-Danlos syndrome never came up. That phrase never came up with doctors at any level.

Lynn Smith:

So when did you finally get your diagnosis?

Erica Baldwin:

So at age 20, I went back to college, finished college, got married in my 20s. My husband and I had some trouble getting pregnant, because of all the scar tissue. I mean, my stomach was just a mass of scar tissue. So we had to do some fertility treatments for that, had some loss within those years. And then finally, when I was 33, got pregnant with my son.

            In childbirth, they induced and I started to labor, but my son's heart rate dropped, and so they had to rush me into emergency C-section. And when they opened me up, it was a disaster. My husband heard them say, "Where is her uterus?" Because, everything was adhered together. Everything was a mess. And they got the baby out. I got to see him be born. I got to kiss his little head and then they ushered my husband out and my son and said, "We have to keep doing surgery." I didn't wake up until about 24 hours later. I had a breathing tube and all these tubes and drains and I wasn't really aware of what happened. It's kind of a miracle that he was just protected in there for nine months and kept alive. And I'm so thankful for the hospital and the doctors who worked on me to keep me here to be a mom.

Chantal Boyle:

It's incredible what your body has been through, and the fact that you are joining us here for this conversation to tell us. How do your health conditions affect you on a day-to-day basis?

Erica Baldwin:

I always have to be on the lookout for new pain. And if there's any sudden pain or a pain that lasts longer than 30 minutes, I have to go to the ER.

Chantal Boyle:

So has that have an effect on work? Are you able to work?

Erica Baldwin:

I'm not able to work full time. I can do some part-time stuff, because my previous career was in public relations, I can do writing and editing from home.

Lynn Smith:

What is your support network like?

Erica Baldwin:

Well, in the immediate, at home, my husband is textbook caregiver. The first year after my son's birth, I was on IV feeding for nine months. We have family friends that have become family to us because of this, going to the hospital with us. But just the groups online. A lot of times it's sending out an SOS, "I'm having this symptom," or "I had this rupture. What did your doctor do?" I find that people with vascular EDS are some of the most hopeful people because we know life is fragile.

Chantal Boyle:

Do you feel in a state of anxiety or you've just become used to it?

Erica Baldwin:

Definitely. Yeah. I've struggled with anxiety and insomnia over the years in different times. Last year, last fall, I remember just struggling with that a lot. At times, I've taken medication for it. I pray. I wake up my husband and just tell him he has to be aware of my symptoms in case it's something is really wrong.

Chantal Boyle:

So how did you learn about the Sunflower?

Erica Baldwin:

My friend, Kelly, who I think you also have talked to, found your organization and I was like, "Oh, that's great." I had not heard of it, and I had not seen it in airports or at businesses, so now I'm going to be on the lookout. When I travel, I have traveled alone a couple times to see friends or family. It's been a struggle, and I am afraid to ask for help, because I look well and I've paid the price for that. The sunflower definitely would have been helpful, because at this point, I don't even wear a medical ID bracelet. I need to. For 10 years, I've needed to order it. And so I know I need those visual aids to ask for assistance and just make it more obvious, less invisible.

Chantal Boyle:

It's a real story of positivity. And I want to thank you for sharing your story with us today, Erica.

Erica Baldwin:

Thank you very much for having me and for your organization. I think it's really important. I'm glad that I'm aware of it now and that I can make others aware. I've already thought of a handful of friends who could benefit from having the sunflower out in everyday life when they travel.