Amniotic Band Syndrome: It’s Okay to Be Different

Abby Jensen [00:00:08]:
Sometimes I get really emotional about it still. Sometimes I just accept it. I’m like, this is what it is, what it looks like. The scar is never going to go anywhere. But then sometimes I’m like, I wish it was different. Like, I always sometimes wonder what my hair would look like if I had the full head of it. But I think for the most part, it’s a part of me. And I love the fact that I can have the option to put my hair on.

Abby Jensen [00:00:29]:
I’m very fortunate, and I have the option. Some people don’t.

Kevin Rolston [00:00:51]:
Welcome to Hairpod, the podcast where you get to hear real people talk about their hair journeys. Hair loss happens to people at different times for different reasons, so each story is as unique as the next. I’m your host, Kevin Ralston. And each week I get to interview people from different walks of life who’ve all been through hair loss in some form or fashion and have found a way to get their confidence and their hair back. Our guest today is Abby Jensen. Her hair journey began in the womb. Abby was born with a rare condition called amniotic band syndrome, which caused scarring on her scalp. I’d never heard of this condition before, so Abby gave me a little bit of a background on how it occurs and just how it set her hair journey into.

Abby Jensen [00:01:38]:
A it’s extremely rare. Usually it affects the limbs, like either your arms or your legs. So mine was rare in itself, but extremely rare that it happened to my head versus anywhere else. It’s essentially when your mom is pregnant with you, you’re in this amniotic sac. And when my mom was pregnant with me, it ripped and her body tried to fix it, and a bunch of blood vessels came together and they created this band, which is where the name comes from. And when I was born, this band was like wrapped all the way around my head. And when the doctors were like, this is causing an infection, like, she’s really sick, they ended up just ripping it off. And when they did that, all my hair went with it.

Abby Jensen [00:02:20]:
I’m actually not wearing any hair right now, so my scar kind of goes all the way around. So I have some hair in the back here, but I have nothing up top at all.

Kevin Rolston [00:02:29]:
Wow. And that’s something from birth. So right away. Wow.

Abby Jensen [00:02:35]:
Right away. And afterwards, I was in the hospital for a couple of weeks because I was also a preemie. So my parents had to learn very quickly how to get care together. So my head offered I needed a bunch of care, but my head needed to be changed every couple of hours with new dressings and stuff to cover it up and keep the infection away, per se.

Kevin Rolston [00:02:57]:
Now, after you were born, how long was this something that you had to pay so much attention to? Does it have a healing process? And when it does, what do you look like at that point?

Abby Jensen [00:03:08]:
It healed, and so I’m just left with, like, a big scar, per se. So I have some growth up top, but it’s very minimal.

Kevin Rolston [00:03:16]:
I’ve never heard of a condition like this. Have you ever heard from anyone else? Have you ever talked to someone else.

Kevin Rolston [00:03:22]:
That has had this?

Kevin Rolston [00:03:23]:
You are one in a million. I think it’s so unique. Your story.

Kevin Rolston [00:03:35]:
According to the NIH amnic band syndrome, affects approximately one in every 15,000 babies. But as Abby said, most children only experience scarring on their arms, hands, legs, or feet. So I asked Abby what it was like growing up with a condition as rare as abs.

Abby Jensen [00:03:56]:
Kids are mean. So I would get a bunch of looks and stares and pointing the finger. So hats were a big thing when I was younger.

Kevin Rolston [00:04:04]:
Do you remember how that made you feel? How did your parents react, too? That’s got to be tough for them to see other kids acting that way.

Abby Jensen [00:04:12]:
It was definitely tough. I think my mom took it harder than my dad, but my dad, they both. I mean, it’s their kid and something that’s not normal about them. And so I don’t remember before I started with hair club, but I remember kind of after I got a wig on, and kids in elementary school kind of, like, started to figure it out because I would go different lengths or colors or whatnot. And no fourth grader dyes their hair, so it was very a big topic when I came into school with, like, brown hair versus blonde hair. Kind of a big conversation. I was four years old when I started a hair club, so my mom was very on the ball of, like, I don’t want her to go to school without hair.

Kevin Rolston [00:04:49]:
Right. Wow.

Abby Jensen [00:04:50]:
So we started with, I forget the organization, but there was one that wouldn’t help me because I didn’t have cancer. And then my mom found hair club for men, because back then, it was just club for men. There was really nothing else.

Kevin Rolston [00:05:02]:
Right.

Abby Jensen [00:05:03]:
And I would have to ask my mom who the directors or the people in charge were, but she found them, and they kind of were like, okay, let’s meet with her. Let’s see what we can do. So they met with me and my parents, and I’ve been a client now for 20 years. I remember my first wig was one I could put on and take off. So my parents had like a little head that we would put my hair on. We would go out in public and then I’d go home and they would take it off and I’d be without it. And then my mom slowly realized that this was not sustainable for, I mean, a kid, like running around like swimming and dancing and stuff. So, okay, they came up.

Abby Jensen [00:05:39]:
Well, I’m sure I was not the first person to do this, but they had me start using a hair piece that I could glue onto my head. So they used like a polyfuse kind of solution in the back of my head because it’s less sensitive. So I had tape in the front and glue in the back for a long time. And I was able to swim. I could dance, I could run, I could shower, I could straighten it if I wanted to, add heat products and stuff. That was huge. It allowed me to be normal, like my friends and my parents and everyone else I knew. So that was just huge in itself.

Kevin Rolston [00:06:12]:
Was it something that you thought a lot about? Were you always aware that you had on some hair? Were you nervous if you went swimming or were doing anything too active as a kid?

Abby Jensen [00:06:21]:
Oh, yeah. It was very like, the chlorine doesn’t like my hair. So I would come out. The pool was a big thing. I’d go with extra leavein conditioner spray and a brush and I’d always be sure who I was with, be able to help me, especially if my mom wasn’t with me. Okay, so it was very like, brush your hair after you swim, put conditioner on it before you go. Just be careful. I remember one time we were going, I think it was the 4 July and it was right around the age, I think I was like ten or eleven, where I was finally like, mom, I can put the tape on myself and do it myself.

Abby Jensen [00:06:54]:
So I remember it flips up. So obviously I’m taping it, so I’m pulling it down and I remember I was taping it and I pulled it down and I ripped it and I was like, oh, my God, I don’t know what I’m supposed to do now. So I put it back on and my mom put like a headband around so you couldn’t see where it was ripped. But she was like, yeah, never again. We’re going to go to hair club and they can teach you how to do it so you can learn yourself.

Kevin Rolston [00:07:20]:
It’s so interesting to hear Abby talking about her experience. She’s been using her current hair loss solution for long enough that she’s really figured out what works for her and made adjustments for that, but she didn’t figure it out all on her own. Abby has been working with the same stylist for all 20 years that she’s been at hair club.

Abby Jensen [00:07:42]:
Her name’s Lori. I’ve been with her since I was four. She’s been the first person I’ve let touch my head. I mean, kind of do anything, and I’ve stuck with her, and I’ve gone to her every month since. My appointments are four weeks apart. Obviously, the scheduling issues here and there. I’ve had, like, other people, but she’s been my rock. I mean, she’s helped me with even dances for school.

Abby Jensen [00:08:03]:
She would do my hair. She helped me learn the colors that I wanted, the styles that I wanted. I love longer hair, so I buy the 18 inch hair. So she helps me kind of what I want to do, what I want to look like, per se. I mean, I have a brown hair, so she helps me color match it and get what I need on order and everything. I mean, she’s been just absolutely phenomenal. I couldn’t ask for a better stylist.

Kevin Rolston [00:08:26]:
Yeah, there’s just something about that, right. When you have that kind of connection with somebody and somebody is there defending you and they’ve got that ability.

Abby Jensen [00:08:33]:
Oh, yeah. And she knows everything. She knows what I like, what I don’t. I mean, how I like the hair put on, how I like it taken off. I mean, she’s got it down. We have a whole system now. When I go in, I know what I’m doing. She knows what she’s doing.

Abby Jensen [00:08:45]:
It’s phenomenal.

Kevin Rolston [00:08:46]:
Tell me a little bit about, because over 20 years, I am kind of curious just how it’s gone. I know how hair club and the technologies have advanced and where you were then to where you are now, how much has it changed? And just what is the difference in the way that it feels and the way that it looks, the texture, even, of the hair that you have now compared to when you were four?

Abby Jensen [00:09:08]:
Oh, yeah, I know. I have better hair, obviously, as technology has moved on.

Kevin Rolston [00:09:13]:
Yeah.

Abby Jensen [00:09:14]:
I don’t have alopecia or anything, obviously. So my hair has kind of been. I order the same thing every month. I get the same thing in, just obviously new versus old. So it’s a system that goes directly on the top of my head, and it goes literally just the circle around. So I don’t have the full hair because I know some wigs can go down to the way back to show the hair on the back. So I just have it strictly up top. It’s definitely been.

Abby Jensen [00:09:38]:
I remember I was blonde for a couple of years. I don’t remember the ages. I would say five to nine. And then I switched to brown hair, like my normal color. I mean, it’s phenomenal. Just the way the hair has evolved. I mean, I used to get really thin hair, and then sometimes the hair wouldn’t be curly enough or it would just be really hard to deal with, like, really tangly per se. Now it’s really thick, it’s long.

Abby Jensen [00:10:02]:
I can color it any way I want to. So that’s really cool. And still now I can still use the heat products. I can still swim, I can still dance. I mean, it’s phenomenal what they’ve really come up with for people like me who can’t. And it’s amazing.

Kevin Rolston [00:10:18]:
Speak a little bit to somebody that doesn’t know. Just how involved is it? How much of a burden is it for somebody that’s used to maybe having their own full head of hair? How much additional work is it? You’re going to the hairdresser, you said every four weeks. But what does it look like in between that time? How much time does it take for you every day to get your hair ready so that it looks the way you want it to look?

Abby Jensen [00:10:39]:
Well, I spend a lot of time on my hair.

Kevin Rolston [00:10:42]:
Do you think more than you need to? Because some people, they would just spend a ton of time. And some people are like, yeah, that’s good enough. I go, to what level do you go?

Abby Jensen [00:10:50]:
It definitely depends. Sometimes I get out of the shower and I’m like, I’ll just braid it and I’ll just let it do its thing. But then sometimes I’m like, I’ll blow dry it, I’ll straighten it, I’ll style it. So it’s okay for a few days. And I think it just depends, honestly, dealing from a full head of hair. And I live with one of my good friends now, so I think kind of comparing someone to full head of hair, and me with, like, half a head of hair, plus the hair piece, I don’t really think it’s any different. I can wash it like normal. I can do normal things that any young adult woman would do.

Abby Jensen [00:11:22]:
I can straighten it and style it. And I don’t think it takes much additional time. I mean, you have to be careful. You have to use some heat protectant and some different products. But no, it’s human hair, so it does everything you want it to do.

Kevin Rolston [00:11:36]:
How aware are you of it? Does it make your head hot. Are there any issues like that, or is it something that just feels like it’s a part of you now?

Abby Jensen [00:11:46]:
I feel like it’s something that’s a part of me. But I know lately I’ve always itched here and there, so usually it gets really itchy about the time that I’m supposed to go. So now my stylist and I have come up with the solution of no more glue. We’re just doing tape, so now I can take it off whenever I want to, which has been fantastic.

Kevin Rolston [00:12:04]:
Right? Wow. Okay.

Abby Jensen [00:12:06]:
So it helps with my itching. I can wash my own head in the shower now, and I used to just wait once a month for her to do it, so that was huge for me. But, no, I think it’s. I mean, being able to take it on and off was a big thing.

Kevin Rolston [00:12:22]:
Listening to Abby now, you can hear just how confident she is when she talks about her situation. But like most people I’ve spoken to about their hair loss, there’s a lot of emotions tied up in hair, whether we have it or we don’t.

Abby Jensen [00:12:39]:
It was very tough to grow up with, and I didn’t want to be different. I didn’t want to have special treatment, per se. I didn’t want to have to brush my hair extra when I went to the pool with my friends. I didn’t want to worry about dance competitions of my hair in different styles and everybody else. And to be able to have the hair piece, I mean, it saved me, honestly. I can be normal. I can look normal. And you wouldn’t know that I wear a wig unless you asked.

Abby Jensen [00:13:02]:
And I used to be so hidden about it if people would tell me, oh, I heard this, whatever, and I was just like, no, that’s not true. My hair is real. I used to hide it, actually, and now I’ve gotten to the point. I’m 24 now, so I’ve gotten to the point where I can share it. I tell my friends, I mean, I’ve only just recently started taking my hair off every so often, so I can kind of get used to washing my head on my own, because that was something I could never do. To be able to share with my friends and family was a big thing for me. I even come to work now with a scarf on, and that’s pretty big, too.

Kevin Rolston [00:13:34]:
What are the reactions you get? What do people say?

Abby Jensen [00:13:39]:
Yeah, I tell people now, and they’re like, wow, I can’t believe you go through that. I can’t believe you deal with this. I can’t believe you can talk about it so freely. I mean, it’s huge to be able to say to people like, oh, this is what I deal with. This is what I have. And to show people, I think when I was younger, I wanted someone to look up to, and I didn’t have that. I didn’t have somebody that looked like me or that had something similar to me. So it was hard.

Abby Jensen [00:14:05]:
I mean, honestly, it was very tough. But now I can be like, this is who I am. It’s not going anywhere. I can’t change it. I can just embrace it. And I think that’s kind of where I’m at is too. I can show my friends, I can show my family. I can be open to strangers about my hair situation and everything.

Abby Jensen [00:14:21]:
So I think it’s a big growth mindset, but also, just, like, an acceptance factor is it’s okay to be different. It’s okay to have something different than other people. And that’s the biggest lesson I’ve learned, is it’s okay.

Kevin Rolston [00:14:34]:
Would those be the words that you would say to the four year old you?

Abby Jensen [00:14:37]:
Absolutely.

Kevin Rolston [00:14:38]:
Now speak to the parents, because I’m sure it was emotionally challenging for your parents as well.

Abby Jensen [00:14:45]:
I mean, it still is for sure.

Kevin Rolston [00:14:47]:
I bet. And so if you were speaking to parents out there, because we deal with a charity that has a lot of kids that have cancer treatments and things like that where they’re losing their hair and it’s tough, and we always focus on the kids and making sure that they’re emotionally right. But I see the same kind of struggles going on with their parents. They want to help, and they feel so lost and so desperate. So what would you say to a parent that has a child that at the age of four, is dealing with hair issues like what you were, I.

Abby Jensen [00:15:19]:
Think I would just say, just be there for them. I mean, let them complain. Let them be sad about it. Let them kind of embrace it. I mean, it’s okay. And I needed to hear that when I was younger that it’s okay to be different. It’s okay to have something wrong or something not 100%, and just be there and that it’s okay. And my mom, the whole line, she still tells me to this day, is, if I could trade places with you, I would.

Abby Jensen [00:15:47]:
And now that I’m older, I wouldn’t want her to trade places with me. So your kid is. I mean, they’re strong as all hell, and they can get through this, and I’m here to talk to little kids like that. When I was younger, I definitely wanted someone, so I can just kind of spread my knowledge is like, I can talk to your kid. I can talk to you. I can help kind of give them a perspective, but just kind of, it’s okay. And essentially, that’s what I think my parents needed to hear, too, was that it’s okay that she’s going through this. She is going to handle it, and she’s going to grow and be strong.

Abby Jensen [00:16:19]:
And that’s what I needed to hear when I was four. And I think that’s what my parents needed to hear, too. Sometimes I get really emotional about it still. Sometimes I just accept it. I’m like, this is what it is, what it looks like. The scar is never going to go anywhere. But then sometimes I’m like, I wish it was different. I always sometimes wonder what my hair would look like if I had the full head of it.

Abby Jensen [00:16:42]:
But I think for the most part, it’s a part of me. And I love the fact that I can have the option to put my hair on. I’m very fortunate and I have the option. Some people don’t. It’s huge.

Kevin Rolston [00:16:54]:
You said when you were younger that kids would know just because your hairstyles would change. How do you feel about now? Do you think that a lot of people realize that you have something, or would most people not?

Abby Jensen [00:17:04]:
No. Because I think now, even when I tell new people I meet and I talk about it, they’re like, oh, no, you don’t. I don’t believe you. I promise. I mean, it’s human hair, but it’s fake. New people that I tell are very surprised when I tell them that my hair is not real.

Kevin Rolston [00:17:21]:
Abby, you have such an inspirational story just from what you’ve been through and where you are and what you’ve done and how amazing it is, I really appreciate your courage to come on here and share that, because there are so many people right now that are going to feel so much better just hearing your story and your conversation and knowing that there is hope out there for them, that if they’re feeling self conscious about it, that they could go out and find hair club, they could find a stylist that could be with them and take care of them just like what you found. So thank you so much, Abby.

Abby Jensen [00:17:50]:
Yeah, thank you so much for listening and spreading my story. And it’s okay to be different. That’s my main message here.

Kevin Rolston [00:18:02]:
Abby’s story is really unique. Very few people have amniotic band syndrome, and even fewer are affected by the way that Abby is. But that’s not the only thing that makes Abby’s journey so special. She has come so far in the 20 years she has been with hair club, not just in how she does her hair routine, but also in her courage and self acceptance. She’s learned not to be afraid of being different, and now she is sharing her story in hopes that a child or parent dealing with childhood hair loss can feel a little bit less alone. Thanks for listening to another episode of Hairpot. If you think this story would resonate with somebody you know, share this episode with them or have them visit our website podcast, hairclub.com. We’d also love it if you’d follow at Hairclub on Instagram or find us on Facebook.

Kevin Rolston [00:18:50]:
Until next time.

Kevin Rolston [00:19:10]:
Thank you.