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Welcome to everybody with Angela Williamson and innovation, Arts, education and public affairs program.

Everybody with Angela Williamson is made possible by viewers like you.

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And now your host, doctor Angela Williamson.

I'm delighted to welcome fashion designer and advocate Amber Leto to our conversation tonight.

But before we start, I just want to thank her for these beautiful earrings.

Amber.

I mean, you're so talented, but then you create jewelry like this that is meaningful.

So why is it important for you to be a designer?

Well, it was important my whole life.

I don't know.

I was, identified as a gifted student, especially in the area of art.

So art was a part of my life all all along from being a small child.

I was involved in, private art lessons.

I was involved in my high school's, extracurricular, our AP art program.

And when it came time to go to college, I was thinking, okay, I'm going to go to the Chicago, you know, Art Institute or, Rhode Island Institute of Design.

And then there was a few other ones, and my dad sat me down and he said, Amber, I'm not going to pay for you to go to school to be a starving artist.

You need to do something else.

So is that where psychology comes in?

That is where psychology comes in.

That was just a natural thing for me because I'm very empathetic.

And even as a teenager, people who were suicidal and had a lot of problems would come to me and just confide in me and felt safe doing that.

So it was a natural career choice for me.

So I graduated from the University of Arizona.

Phi beta Kappa, magna cum laude, a 3.85 GPA.

And then guess you are smart.

Oh, that was just undergrad.

Then I went on to, the University of San Diego.

Yes.

Where I got my first master's in counseling psychology, and I had a 4.0 there.

And then I went on to another school in California that no longer exists.

But, I did graduate with a 4.0 and highest honors and all that, so school's just been I if I could have been a professional student, I probably would have.

But, I spent 35 years as a psychologist and a therapist helping other people overcome their problems in life.

Their challenges, you know, helping them learn how to communicate with other people better and express their feelings and just provide coping skills because a lot of these people don't don't have a background that that was able to give that to them.

Well, and you talk about coping skills and how you helped a lot of people in that area.

But at the same time, you're having your own physical journey and hardship.

And I want to spend some time talking about that because you've used this journey to not only help others, but is the reason why you're an advocate today.

So tell our audience about your journey.

Okay.

I have what is called a lost download syndrome.

It's, EDS for short.

That's the easiest way to find it is just search ideas.

And I have parts, subtype 13 and part vascular.

And it is a disease of your connective tissue, your fascia, your joints, your muscles, your tendons, your ligaments.

I was born without the ability to produce collagen or elastin.

And supplements don't work with people who have EDS because we weren't born with the ability for our body to process it in the first place.

So topical stuff and supplements, unfortunately not help.

And on the average it takes 30 to 40 years to get correctly diagnosed with this disorder.

And I got diagnosed at age 50 during the pandemic in 2020, I was, diagnosed at Mayo with it.

And unfortunately, there is no cure and there's no treatment.

It is a disease of chronic pain, chronic muscle spasms, skeletal deformities.

I had a 14 level spinal fusion and went septic in the hospital and almost died, and I had to have my rib cage rebuilt.

And now they just found, I have a brain tumor, but that's under control.

That has I think that's a completely separate issue.

But basically every day you don't know how you're going to wake up, how you're going to feel if you can get out of bed or not.

So every day is kind of a little surprise, you know, and I just try to make every day the best day possible and do everything that I can where I'm able to or.

And you, you talk about this disease and there's no cure.

Correct?

That is correct.

There is no cure.

It's something that you have to learn to manage.

Yes, but you're spending your time as a doctor as well as a psychologist, helping people cope.

How does Amber cope with this?

Well, kind of like my brain tumor.

When they told me I had one, it's like I couldn't see it.

I couldn't feel it.

And I was on my way back to my sophomore year at the University of Arizona.

And they said, well, we can do surgery, radiation or give you these pills that are going to make you really sick.

So I said, give me the pills.

I got a plane to go.

And it was just, I don't know, I just persevered, I just went on and then with my, with the Ehlers-Danlos, it is a disease that takes your mobility from you quite slowly.

So eventually I will end up in a wheelchair, and I know that already.

But of course, I'm going to decorate it and bling it out because you are a designer.

That's what I do.

Yeah.

And so, because the art never left you, I mean, you followed your father's path.

No, no, no, I you know, I followed up with others with the.

Yes, I call it cycle.

You're like no, no.

Yeah, yeah.

Did you deal with that part but the other.

But art never leaves you.

I mean, that's just part of who you are, the fabric of your being.

And you have this disease that impacts that.

So how does Amber go in and design beautiful pieces so that women like me can, you know, learn and learn to love ourselves with who we are in the body.

We're in.

Well, that's interesting that you ask that question, because what I used to do is help people feel beautiful from the inside out.

Yes.

And provide them with, you know, with tools, with coping skills, with just being a sounding board with, you know, just helping them along in their journey.

So now I get to make people feel beautiful now from the outside in.

And part of my, my brand is, I have no vacancies by Amber letter.

I have, amber letter designs, and then I have amber letter, one of a kind.

And with every with every design, I make my I get closer really geared towards women who just want to feel like they're the center of attention, to see all the spotlight away from everybody.

And like it's a given when you show up in something that I where people will come up to you, they will talk to you, they will ask you about where where did you get this from?

I've got a friend, in Arizona that wears my house sunglasses.

And every time she wears them, more and more people come up, like from across the mall or across the street to ask about them.

Because, like, I like to make everything, like a big display.

And one of my models, mothers, when we were in New York City, wore two gowns that I designed.

And the one, the one of them, she didn't get to walk around too much in, but the one that she did, she said people were coming up to her all over the place.

Where did you get that from?

That looks incredible.

That's amazing.

And that's the experience that I want other people to have when they show up and when they when they buy or they wear something that I created, whether it's a pair of earrings, a hat, my sunglasses, or like this outfit that I created, I love it, I love it, and I mean, this is all going on.

You know me about to bling.

Yes, but it's not only it's more than that for you, Amber, because you are designing fashion and giving back and highlighting people with disabilities.

And a lot of times we don't think about that.

And people with disabilities, they want to have fashion too.

They're just as beautiful.

And so do you think your degree in psychology helps with that?

I don't know, because I'm a very, I'm an empath.

And so I would maybe, possibly.

But it's funny, when I travel, I have to use wheelchair assistance because I can't walk or stand for great lengths of time.

And what I've resorted to is wearing a lanyard with a handicap sign on it, because the more, more often than not, I had an experience where one guy was pushing my wheelchair when I was in, Arizona, was flying out to somewhere, and he said, here's a young guy, ma'am, can I ask you a question?

And I said, sure.

You know, go ahead.

He knows you're so pretty, how can you be handicapped?

And I said, sweetheart, it doesn't discriminate.

And that's so true.

But there's mine is an invisible disease.

So it's not like cancer.

It's not like other diseases that you can see.

It is completely invisible and your body becomes your prison.

So it's like you're trapped in this body that you can't control, that's controlling you, that's causing skeletal skeletal deformities, that's causing muscle spasms, that's causing, you know, joints to pop out, need to be pop back in a lot of sub locations.

So, I mean, it doesn't it doesn't discriminate at all.

So, one of the things that I did when I was in Hawaii is I put a beautiful blind model, on an elevated stage in my fashion shows.

You walk for me twice.

And it was, from what I've been told, it was the first time in United States history and in the history of Hawaii that a blind woman walked an elevated platform in a fashion show.

So my manager and and, the other woman in Hawaii did some fact checking, and I believe it was done once in Copenhagen and once someplace else.

But they are crediting me with being the first to put a blind woman in my show on an elevated platform, and she rocked it.

She did a great job, in your opinion, because now you are now you're Amber, the fashion designer.

I want to call you doctor Amber, the fashion designer.

I was thinking of calling myself Doctor Design, but then that sounded to you like.

Like Doctor Gadget?

I don't know, like Inspector Gadget?

No, I like the one of the kind designs.

I like that one myself.

But I like doctor Amber because you.

What you're doing is you're adding another level to the fashion industry, and you're changing the way we look at beauty.

How difficult is that for you?

For me, it's not difficult at all.

So I quickly learned that everything that you're promised doesn't always happen.

And I have this horrible habit of calling people out.

Like, if you told me that X, Y, and Z was going to happen and I get there and there's no X, and there's no Y, and there's no Z, there's not even an A, I'm going to be like, where is what happened?

This is what I was promised.

This is what I was told.

This is what needs to happen.

So I'm the same way with, you know, working with people with disabilities and putting them and my show, I mean, when I close my show, I literally have to be locked arm in arm with my last model.

They literally hold me up and I just did, well, not just but a couple months ago, I did a fashion show in, Phoenix where, Kay Johnson, who was, Miss Arizona.

We close that show together and we closed another show together where she literally this woman was like five, 11.

She's super tall, but she literally is just.

Okay.

I got you.

And I just like, you know, walk.

However, I can get down there and walk back, but, Yeah, I mean, I just make the most of it.

And I have had to make a lot of changes in my life as far as, like, socially, what I can do.

I know that I can't go to a concert unless I have a seat.

I know that I can't, be anywhere where I'm standing for a long period of time.

I had to give up, exercising, which was one of my you just passions.

And I wrote my dissertation on the effect of exercise on anxiety.

And StairMaster Corporation sponsored my study.

So it was it was.

I mean, exercising was really part of my daily life.

Yes, 24 seven.

I just loved it.

But I think that I've been able to transform, you know, that outlet, to just hone in much more on my designs.

That first segment went by so quickly, but when we come back, you touched upon learning to live with Aids, and you talked about how you're changing that and your lifestyle.

When we come back, I want to talk a little bit more about that.

And because I want to go back to doctor Amber is how what you've learned with Aids to teach us how we can cope with things that are out of our control, especially when it impacts us physically.

Definitely.

And then I want to talk more about your designs because you are designing for all women.

You know it.

I even ask about like, do you design for curvy women?

And you said yes.

So we want to talk about that because we want to change the way society looks at fashion.

Most definitely.

Wonderful.

Thank you so much, doctor Amber.

Okay, come back to hear more from doctor Amber.

Welcome back.

Doctor Amber.

That was such a great first segment.

It was also educational.

You informed us.

But also we see the importance of how we can use something like fashion to change a perception of what people think.

So let's come back and talk about you talked about the changes you've made with Aids, but then what fascinates me about you is that you spent your career teaching people, giving them coping mechanisms for situations in their life.

And so let's talk about that because we may have viewers that are there facing challenges and they see you and they say, oh my goodness, she looks like she has it going on now.

They say she looks like there's nothing wrong.

Yeah, yeah.

Like what's wrong with her.

Yes.

Well and you you mentioned that I mean that's, I mean his comment was innocent enough because a lot of times we don't see it unless it's, you know, a lot of times you don't see what's happening inside people's bodies.

So let's talk about that a little bit.

And then I want you to tell us, how can our viewers or us as a community help fight this disease?

Okay.

Well, with that said, I'll say, I'll tell you this.

Towards the end of my career as a psychologist, I decided to out myself on social media and let them know that, in a EDS chat group, in Arizona, that I suffered from the disease.

And I was also a therapist.

So I ended up taking on a lot of patients who had that disease.

And that EDS is coexists with so many other diseases.

It coexists with pods.

It coexists with muscle activation syndrome, which I also have, I have that as well.

And several other like rare genetic disorders.

It's a genetic disorder.

Okay.

So unfortunately for most people, their journey through EDS is they go to a whole bunch of doctors, and at the end of everything, they end up behind a psychiatrist desk because it's an invisible disease.

And working with my patients and just knowing what I know about it, it takes your quality of life from you.

It affects marriages, relationships, your, relationships with your children because it is passed on.

It is also a disease.

There's chronic fatigue, there's insomnia.

There's so many different things that fall under the umbrella.

And it's very difficult sometimes for people with this disease to, like, really show up in life.

A lot of times you people can't work.

Or they have to work from home and, it's it's it's rough because the disease shows up and presents differently in every single person.

It's it's different.

So there is no like textbook description.

There's 13 different subtypes.

And like I said, I have a variation of two.

And then they also, like I said, coexist with other diseases like I have mouse activation syndrome.

Explain that.

So mass activation syndrome more or less it's not an allergy but it's like an overproduction of histamine.

So I have patterns all over my skin of hives.

And I used to have these things called itching attacks, where you literally itch from the inside out to the point where you're going to lose your mind because it doesn't stop and goes on for hours or hours.

So it's like, imagine being attacked on every area of your body by mosquitoes, but constantly like it doesn't stop.

So there's all sorts of different things that I tried to help with that, and unfortunately nothing truly worked.

I tried red light therapy.

I tried a whole bunch of different, topical steroids, you know, stuff for, for itching, with people who have the muscle activation syndrome.

We did find, there's a drug called levo atrazine, and it's called XYZ.

All, brand name.

And it works on a different histamine receptor than all of the other, like Benadryl and all the other ones.

Okay.

And it works on a different histamine receptor, and it actually stops the itching, which when I found that I, it was such a blessing because that was just a horrible thing, horrible thing to go through.

But with this disease, like I said, because it's an invisible disease and it limits your mobility and limits your ability to do so many things.

And it really affects a lot of relationships and, and families.

And, that was one thing that I did as a, as a psychologist was really try and help the individual, help educate the family about it, because there is one question on the medical exam boards about it, one question, one question about it on the medical exam boards.

Yes.

So I see the issue here is that we are we're missing the thorough education of the disease because we talk.

I mean, when you say invisible, I mean those diseases we see like what cancer and things.

We have tons of research.

We have tons of money going towards it.

We have a lot of information at our fingertips.

But is this why it people need to see, psychologist?

Because it just it makes you depressed.

It what's on your mind?

It makes you depressed.

And like I said, it it it lowers your quality of life and your mobility and your, mobility also.

So.

And it's, it's progressed very slowly or it can progress quicker in some people than others.

And like I said, they co-occur with other disorders.

But but I would say yes.

I mean, it is something that causes depression and it does cause anxiety.

And sometimes it will get misdiagnosed as one of those things I know.

Fortunately, I already had my doctorate when I was seeing doctors about this disease, so I had a different relationship with the medical community then, unfortunately, than my patients did.

So I didn't end up behind the desk of a psychiatrist or a psychologist psychiatrist.

Yeah, well, this is just fascinating because, you know, people talk when in our previous conversation we talk about, you know, people notice your desires.

And and that is how I know noticed you was that you were wearing this stunning blue dress, but it was in getting to know you that I understood for you to even make and wear that dress, the journey you've gone through to do that and it it actually creates a different mindset.

So it's almost like you have to change a mindset.

Am I right or wrong?

No, you're right, you're right.

Because because with this disease and, my niece suffers from parts and, and, and with this disease and, and with, some of the blind people that I, that I met and worked with, like, it has to become your new normal.

So everything that you knew has to go away.

There is at least I went through a grieving process for the loss of your ability to control your body, a grieving process, due to the fact that you are trapped inside this body that is no longer an able body, but it is a disabled body.

And, you know, there's there's a process of going through that and having to really understand and recognize that now you have certain limitations in your life, and it's learning to live with those limitations.

And you have learned to live with them by creating these one of a kind designs and getting people that we wouldn't normally think of to model them.

Yeah.

How do you do that?

I just got really lucky, this this wonderful woman tsunami heist.

And on this wonderful woman, you know, he approached me and, asked if I would have, a blind woman walking my show, and I didn't even see her.

I said, of course.

Yes, because I'm a disabled designer.

Of course I was, of course.

So, I met her, and we fit her into different outfits, and she could, you know, feel the texture of it, and she loved it.

And, they actually put, like, reflective tape or something on the, runway because it was elevated so she could see.

And, she wore a feathered outfit of mine, and then she wore a denim outfit of mine with these amazing boots that she had on that were all, you know, all blinged out.

Yes, yes.

We love being on the show.

Yes we do.

Yes.

Oh, wow.

Well, I can't believe our conversation's almost over, so I would love you to answer two questions.

One, how can we support you?

And in learning more about Aids and getting research out there so that we can fight this disease?

And two, how can we support you so that you can continue to create these one of a kind designs for everyone?

Well, one of the things that I decided I was going to do is once I make it big, which you know, it's there, it's there.

I'm going to donate a proceeds of my sales and everything to research for Aids.

There's not a lot of clinical trials for people who have it.

There are surgeons that refuse to operate on people that have it because some people, unfortunately not not myself, but some people, when they go under anesthesia, they're not under they're still awake, but they can't signal to the doctor.

So they have that problem.

I don't have this issue, but they have problems with healing.

Unfortunately, I fortunately, I don't have that problem.

A lot of them have problems with dental work because they can't get numb.

So just, you know, spreading awareness about it and, you know, donating portions of my, of my research to doing that.

And then did you ask, where can I where can you guys find me?

Yes.

You want to support you because you're your designs.

They're inspirational and you are setting the pace of how we now look at fashion and who it's for.

So we definitely want to support you.

Yes.

Well, fashion I believe is for absolutely everybody.

Everybody.

And like I said, what I like to do is to make your everyday person who may not be used to getting attention and bam, you're in the spotlight, you're the center of attention.

And it's a it's a feeling.

And I have a great feeling of like confidence and fierceness and, and, just feeling empowered and strong and that's, that's really what I'm selling is that experience.

So you can find me on Instagram at Amber, Amber and then Leto underscore and then my website is Dot Amber leto.com.

Good.

And we'll make sure to put all of that up there so our our audience can find you because they may want these or they might want they might want those.

I mean I made this last night okay.

So just for the show, I, I did, I did you made it for the show.

Amber.

Thank you so much.

I mean, not only with what you've done as a psychologist, doctor Amber, what you've done as a psychologist and helping people and giving them the coping mechanisms that they need to get over life experiences, but also taking the time to explain this disease.

And I know it took a lot for you to be here today, so I thoroughly appreciate it from the bottom of my heart.

It was my pleasure and I'm so glad you like your ears.

I love them, I absolutely love them.

And she gave me another pair.

So you'll be seeing that on another episode.

Thank you for joining us on everybody with Angela Williams.

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Good night and stay well.