(uplifting music) - Welcome back to "Family Health Matters".

I'm Shelley Irwin.

With me today is Jenn Groendyke, Wellness Program Manager at LAX Enterprises & More.

Colleen, appreciate you, Kmiecik, you are from the Autoimmune Association Director of Marketing and Communications.

Colleen, hello to you as well.

Yes, here to talk about a very important topic that might not get the attention it needs and deserves.

So I'll start with you if I may, Jenn.

How are you involved in this topic?

- [Jenn] Well, I have autoimmune, a couple different ones.

I have alopecia, I also have Crohn's and Hashimoto's.

- Right, and your involvement, if I may, Colleen?

- [Colleen] I am an autoimmune patient myself.

I have celiac disease, and I'm also the Director of Marketing and Communication for the Autoimmune Association, which is something that's incredibly important as we bring awareness to all of these autoimmune diseases.

- Yes, obviously alopecia important, but we're going to expand into the whole subset of autoimmune disorders.

Let me begin with you, Jenn.

How would you define alopecia?

- [Jenn] Alopecia, there's very different variations of alopecia, and I think something alopecia areata, can be usually patchy, so you might see some people with just patches along their heads.

They also have alopecia totalis, which is the total hair loss of just the head.

And then universal, which is the whole body hair loss.

So the head you can see, you will often see people that have hair, the loss on the scalp, the eyebrows, eyelashes, nose, you know, facial hair.

And then some people just have lost hair on the entire body from head to toe.

- Hmm, yes.

How does your story begin, if you would, Jenn?

- [Jenn] Back in '07, I started noticing breakage of my hair.

I had Crohn's diagnosis back in '06.

I noticed breakage of my hair and just thinning in '07.

And then back in '12, my hair stylist started noticing spots throughout my hair.

And I started seeing a dermatologist, and I did some different treatments for that.

And then finally in '18, I shaved it off and I actually have no hair on my head, wear a wig, and I have no eyebrows, and no hair on my left eye and no nasal hair.

- Hmm, wow.

Back to you shortly.

Yeah, thanks, that's what we're talking about, right?

Tell me about you, if, you would, Colleen, your story please.

- [Colleen] I was diagnosed with celiac disease almost exactly two years ago.

For many, many, many years.

I mean, probably 20, 25 years, I had been suffering with a variety of just different symptoms.

Primarily though, extreme fatigue and migraines that were progressively getting worse.

And then, you know, just kind of a host of various other things, but those were the two big ones.

And over the years I had seen various doctors, you know, I had all of my blood levels checked for the fatigue.

Everything looked good.

I went as far as for the migraine, seeing a neurologist.

My brain was fantastic.

Nobody could tell me what was wrong.

I just learned to deal with it, really.

And then about two years ago, I got a routine colonoscopy, and I didn't have any digestive symptoms.

So, you know, never thought celiac.

It was just a routine colonoscopy.

And as part of that, my doctor said, "Let's do an upper endoscopy as well."

That way you can walk out of here knowing that we looked at you from top to bottom, and you can feel, you know, you can feel good for the next, you know, 10 years.

So it was part of the upper endoscopy, actually, that he noticed some, it's called blunting of the villi, the celiac causes, you know, the changes in your intestines, and so, the small intestines, and so he saw that in the endoscopy, which is not at all what I was expecting.

I was expecting a clean bill of health.

Like I said, I had never ever expected celiac disease.

And so he told me that he saw that and he suspected celiac.

And I said, well, that's really odd because I don't have the classic celiac symptoms.

I don't have the digestive symptoms, I don't have the diarrhea, the constipation, the nausea.

And so he said, "Well, let me ask you this."

He said, "Do you have headaches?"

And I said, yes.

And he said, "Do you have fatigue?"

And I said, yes.

He said, "Do you have joint pain?"

And I said, yes.

And he said, "Guess what?

You have symptoms."

And so, you know, the biopsy came back and it did, in fact, confirm that I have celiac disease.

So all of those years that I was going to, you know, various specialists, never once thought to consider a gastro specialist because I just didn't have those symptoms.

That's what it turned out to be.

So I've cut gluten from my diet and I'm significantly better.

- Hmm.

Are both of your, shall I say, strategies, lifestyle, does it come down to lifestyle changes, I'll start with you, Jen?

- [Jenn] So for the Crohn's, it definitely is.

I have to watch what I eat, watch what I drink.

So definitely adjusting my diet.

- And expand more into your Crohn's.

- [Jenn] So I was diagnosed with Crohn's.

I had some severe diarrhea, stomach issues, pain back in '06.

It was December of '06, and I was, you know, using the restroom 15 to 30 times a day.

And ended up, was just with my PA. And then they referred me to a gastro, and I actually met him at my colonoscopy 'cause it was just so severe.

And that's where they had diagnosed me with a Crohn's, was through my colonoscopy.

- Hmm, and staying with you, Jenn, any family issues you ask, "Why me?"

How did they finally diagnose?

I mean, how does this happen?

- [Jenn] So I do have, on my dad's side, I have an uncle and a cousin both, one has ulcerated colitis and the other one does have Crohn's.

I don't have, you know, we've had IBS and other things on both sides of my family, but you know, my mom, dad, sister's, brothers, none of them have that.

- Hmm, yes.

Colleen, let's talk a little bit about the Autoimmune Association and in general talking about autoimmune disease, do I go with that?

- [Colleen] Absolutely.

So the Autoimmune Association is the world's leading organization fighting for autoimmune disease.

We're really trying to raise awareness, find better treatments, advance research so that we can, you know, so that the medical community can understand it better, diagnose it better, and ultimately treat it better.

Really, what we're looking for is a cure.

Autoimmune disease actually, and this might come as a surprise, is the leading disease right now, the leading chronic chronic disease in the United States, more than 50 million patients have been diagnosed with autoimmune disease.

And that's not even including the people that haven't been diagnosed, because it is very, very hard to diagnose.

So there are thousands and thousands of people out there that haven't been diagnosed yet.

So what we're trying to do at the Autoimmune Association really is just raise awareness, get people talking about it, get people understanding, get people understanding it so that when they're having these odd symptoms that doctors just can't seem to pinpoint, maybe they'll consider, you know, autoimmune disease.

It, you know, education really just needs to be heightened both at the patient level, the medical community level, the research level.

And if we don't talk about it, those changes aren't going to happen.

- Hmm, Jenn, back to your alopecia.

Were there treatments to assist with hair regrowth before you chose to follow what your lifestyle?

- [Jenn] So I did a lot with my dermatologist.

We did, it's like a, it's a contact immunotherapy, so it was like a square of acid that we'd put on my head.

And basically what it's trying to do is to take your body and force it to treat this allergy that you're putting onto your body, and ignore the fact that it's trying to think your hair is not supposed to be there.

So you work on this, and it didn't work for me, but some people have seen treatment on that.

I've also done intralesional, I think is how you pronounce it, cortisone shots.

So there's a bunch of fine little needles that they put into the spots of your head all over so you can go in and get 50 to 100 shots in your head.

And that did help for a little bit, but it also can end up forming dense into the scalp.

And so at after a while that just doesn't work.

Or if it's ideal for patients that have like 25% hair loss or less, and I had just gotten to the point where I was just losing too much hair or the dents were coming, so we would alternate between those shots and a different kind of steroid shot.

I also tried other types of lotions and gels that just ultimately didn't work.

And unfortunately it kind of came down to the point where they didn't have any answers for me and just kind of, I think, I got frustrated, it was costing too much money, because alopecia is seen in the insurance world as a cosmetic thing.

So insurance doesn't typically cover it.

It becomes very expensive.

And honestly I just kind of start to accept it and move forward, and realize there's other things to worry about in the world.

But I do think in the time that we're in right now, social media is amazing.

There's a lot of amazing people out there that also have alopecia.

You feel like you're the only person, but when you start doing your research, there's so many people out there and there's great people to follow, great influencers.

One thing that I've learned about, these are called bossy brows.

They're like tattoos that you can, you know, you go to the store, you get like those 25 cent tattoos, temporary tattoos, these are what those are for your eyes, and they're amazing.

And when you don't have eyebrows, it's very disheartening to look into the mirror, don't have hair, don't have eyebrows, don't have eyelashes.

But if you can put these on, they're just kind of give you the extra sense of feeling normal, I guess, if that's the right word.

- [Colleen] If I can just follow up on what Jenn said, she talked about community and social media, and the influencers.

That is a really, really big part of dealing with an autoimmune disease.

You know, we are trying to build that community, and that community is out there.

There's a lot of communities out there, and I think it's really important for anybody who's dealing with an autoimmune disease, and there are so many of them, there's over 100 different autoimmune disease.

And so whether you are looking for that community that, you know, is just your particular disease or you're looking for the, you know, the community of anyone suffering with any autoimmune disease, they're out there.

And I think that it's really important that you find those people and share your stories, share your tips, and share inspiration.

We're just coming off of March, which was Autoimmune Awareness Month, and we did a lot of that.

And if you, you know, there are so many stories out there of people that are going through this, and you can find strength in that community.

I think that's a really important point.

- Hmm, and I trust staying with that.

Colleen, one most probably should reach out to your association for support.

Where do I go from here?

How do I live my life?

- [Colleen] Absolutely.

I would encourage anybody to, you know, visit us, the Autoimmune Association.

The website is autoimmune.org.

We are on all social media channels.

You know, our Instagram and our TikTok channels are, are very, very popular and we have a lot of videos on there that have, you know, educational information.

But we also do feature patients where they are sharing their stories.

And so, you know, the hope there is that people can, you know, find people who are just like them and find that support and that encouragement among their community.

- Hmm, talk to me Jenn, a little bit about your family and, you know, the positives and the maybe not so positive that they may have to experience.

- [Jenn] You know, my family and friends, the Crohn's was one thing.

They always were understanding about that.

You know, the thyroidism is just something else.

But my hair was a huge thing.

When I was in high school, my hair was like the best part of me.

You know, I just lived by my hair.

And so to lose that, and was a big, it was very difficult.

My family and friends and my coworkers have all been so just gracious and understanding and supportive.

And, you know, I have two boys and they would, you know, I had them help me and my husband, you know, shave my head.

They were just part of that.

And my son, I would apologize 'cause I was afraid of embarrassing them.

And my son, "I'll beat those kids up if anybody makes fun of you."

You know, they just had my back and I'd ask them, do you want me to put my hair on before your friends come over?

And I'm like, no mom, you're fine, you're beautiful the way you are.

And just to have that support and just, it's amazing to be able to count on your family and friends.

- Yep, and aren't there organizations that actually help with providing you with the appropriate wig that fits your lifestyle?

- [Jenn] So there's a place in the Grand Haven area.

Her name is Confidence Beyond Hair Loss.

Her name is Rachel.

I've not been there before, but I've followed her on social media and she just looks like she does amazing things.

It's a more of a one-on-one type of a thing they have.

Beyond just the wigs that I had shown earlier, they have hair pieces that can adhere to your head.

You can use glue.

There's so many different things.

And she can take a wig and make it you just for you.

So you can't even tell, they have toppers.

So if you're starting to thin, you can clip them into your hair.

There's just so many different accessories and ways to wear it.

And there's really no need to feel just that you can't do anything.

There's always something.

There's also, you know, the National National Alopecia Area Foundation, so it's NAAF.org.

They have a Facebook group.

There's tons of different social media different groups too.

For anybody who has young children with alopecia, Baldtourege, it's B-A-L-D-T-O-U-R-E-G-E.

The girl that sounded that is Christie Valdiserri, and she was the first swimsuit, Sports Illustrated swimsuit cover model was alopecia.

So that was pretty cool too.

- Hmm, great.

Colleen, back to the organization, obviously, what else falls under autoimmune, rheumatoid arthritis, which is often, you know, what most people might think about, lupus, yes?

- [Colleen] Yeah, absolutely.

Rheumatoid arthritis actually is probably one of the most common autoimmune diseases.

And like I mentioned, there's over 100.

Some of the most common that you may have heard of, you know, like Jenn mentioned, Crohn's disease, colitis, lupus, type one diabetes actually is an autoimmune disease.

Psoriasis, psoriatic arthritis, you know, there's a lot that out that are out there that people don't realize are in fact autoimmune disease.

And then you have, you know, the many, many that people, you know, haven't heard of.

And so, you know, there's scleroderma, there's sarcoidosis, Sjogren's disease, which attacks your mucus producing membranes.

So dry eyes, dry mouth, that's becoming a more common disease.

So there are so many out there.

And I think that, you know, is part of the problem in diagnosing it, is that there are so many.

I think the medical community, you know, might be a little bit perplexed and might need some education.

I think that we need to advance research.

Recently, a new office within the National Institutes of Health has been established.

It's the Office of Autoimmune Disease Research, that just went, that was just signed into law back in December.

So that's a new office at the federal level that is going to be promoting this much needed research.

So we're making progress, you know.

There needs to be a lot more, you know, research that happens so that we can, you know, diagnose these better and treat these better.

But we're headed in the right direction.

It's looking positive.

- Yes.

Jenn, what are the chances, the risks that your boys may develop an autoimmune disorder?

- [Jenn] So from what I understand, it's familial.

Doesn't necessarily run from, you know, mother to child.

Just my parents didn't necessarily have an autoimmune disease that I know of anyway, but I didn't get alopecia, or Crohn's, or thyroidism from either of them.

But it ran, it definitely runs in the family.

So there's a potential chance, but they could also not get it at all, just luck of the draw.

Colleen might be able to answer that better.

- [Colleen] Here's the interesting thing about the familial connection.

It definitely does run in families, but the really interesting thing, and it's kind of fascinating, is the disease, the particular disease does not necessarily run in families.

So Jenn, while you may have alopecia, if one of your children were to develop an autoimmune disease down the road, it may or may not be alopecia.

So that's actually something very, very important, you know, for your listeners and viewers to take away from this.

If you are experiencing any odd symptoms and you, you know, present this to your doctor and they just say, you know, I don't know what it is, it's really, really important if any of your family members have any autoimmune disease.

And you know, even if it's not one that you're suspecting because the symptoms just don't match what you're experiencing, it's really important that you let your doctor know that autoimmune disease in general is in your family.

Because while you may not have the same autoimmune disease as a family member, just having that tendency to develop an autoimmune disease is hereditary.

- Is age a risk factor?

Could one tend to perhaps not have the symptom in their, you know, zero through 50 and then all of a sudden age 60 comes around?

- [Colleen] It is, it is.

And I mean, and that's true, in my case, I didn't have any symptoms.

I don't, you know, I don't even think I developed celiac.

I don't think I had celiac as a child, honestly.

I didn't have any symptoms.

And so I, you know, it is very common that you can develop an autoimmune disease later in life.

- Obviously just the two of you as women, are women more susceptible?

I'll start with you, Jen.

Do you know?

- [Jenn] I would imagine, so, I feel like a lot of the women in my life do have some kind of autoimmune issue, but I don't know if that's because women are more tendency to go to the the doctors.

But that's, I would lean towards, yes.

- Well the fact is that 80% of people living with autoimmune disease are women.

- Wow.

- [Jenn] 80%.

- That took care of that.

Does stress trigger symptoms?

- [Jenn] I would say most certainly for me.

I know it can alopecia a lot of times can, so alopecia is not always a permanent thing.

It can come and go.

Just because I have not regrown my hair doesn't mean I will never regrow my hair.

It can be very cyclical.

Some people is alopecia can just stress can bring it on, a sickness can bring it on and it can just be the areata, but it's just very patchy.

And then it can just, your hair will grow back and some people just doesn't grow back.

Some people never grow hair and some people don't lose it until they're in their 30s or 40s.

So you just don't know what will bring it on and what won't bring it on.

But stress definitely can cause a flare with my Crohn's, can cause a flare with my hair growth.

And sometimes honestly not having, if I'm constantly stressed, the lack of stress, I will get sick as well.

So.

- Colleen, add to that and then I'll ask if such that, one, I mean this is a chronic disease, so lifestyle is important.

Where does, I'm jumping over the map.

Where does exercise play its role?

What more on lifestyle changes, should I walk more, walk less?

Would that be a trigger?

- [Jenn] You know, I think it kind of depends on your disease and your symptoms.

Pain is, is a very, you know, across the board, you know, despite what disease that you have, there are some common symptoms and that, you know, would be fatigue, digestive issues, skin issues, and pain.

Pain is a very common symptom among all autoimmune disease.

And so, you know, I think that that's something you probably would wanna talk to your physician about.

I think that, I think movement is always good for the body, but I think rest is important too.

And so, you know, if you're dealing with arthritis, you know, the level of exercise might differ that if you're dealing with celiac.

You know, with celiac there's no restrictions to my movement.

But if you're dealing with, you know, something else, you know, something joint related, you know, your doctor might recommend physical therapy, that's a common treatment.

But I think that's something that I would encourage patients to talk to their physicians about.

- Hmm, Jenn, back to the psychological angle.

What do you tell one who sees you without your hair that might, the non-verbal sign may be that perhaps she thinks you have cancer or other, how do we best react to you?

What do I say?

- [Jenn] So I actually, right after I had shaved my head, I went to the gas station and the gentleman asked me if I had cancer and I had told him, you know, I don't actually, I have alopecia and it's, you know, it's where my hair falls out and I don't know if it'll ever or go back.

And I think I kind of caught him off guard, because very rarely do you see a female without hair.

And if you do, cancer is probably the first thing that you think of.

So it's a usually a learning point.

And to be honest, psychologically it, my confidence comes and goes.

There's sometimes that I don't wanna leave the house without my hair on and other times I have no problem at all.

So it's definitely a emotional rollercoaster, if you will.

And a lot of my friends, I have no problem.

I can, you know, hang out at the lake all day long and not have my hair on.

People at the lake I think probably have never seen me with my hair on, to be honest with you.

But it's just some days you just don't feel it and you know, you wanna wear it in the house 'cause you just really miss putting your hair up in a ponytail and walking out.

But I think anybody that has hair loss just understands that feeling, you're self aware of people looking at your hair, looking at, you know, can they tell it's a wig?

Can they tell that may have spots missing?

Can they tell, gentlemen, you will miss, have spots in their beard.

And I'm sure that that's very sensitive to them too, or eyebrows that are missing or, you know, spots in the back of their head, and it can be, you feel extra self-conscious.

- Hmm.

Colleen, we mentioned female dominance.

What about the minority population?

- [Colleen] Yes, it is actually quite common in the minority population and in rural areas as well.

That's actually a focus that we're looking right at right now at the Autoimmune Association, is reaching that rural audience who doesn't necessarily have the easy, you know, access to healthcare that people living in the larger cities, you know, do have access to.

So, you know, we're focused on the rural population, we're focused on the, you know, the minority population because, you know, all of these different populations have different challenges.

- Hmm, yes.

So what the I guess, back staying with you, Colleen, you mentioned research.

What's our advocacy, what's our action item as far as making sure we advocate for ourselves as patients, right?

- [Colleen] That's a fantastic question and I'm glad that you brought it up.

So first, advocating for yourself, you know, as a patient is really important.

You know, we hear so often, you know, there's this term gaslighting in the medical community when, you know, visit your physician and you tell them your symptoms and they just kind of say, oh, there's nothing wrong with you.

You're being dramatic.

Or, you know, just, you know, sleep a little bit longer, reduce your stress, and they just kind of blow you off.

So you really need to be an advocate for yourself when it comes to, you know, dealing with your healthcare team.

You need to say no, you know, I know something is wrong.

I need you to run these tests.

I need you to refer me to a specialist.

You know, ask as many questions as you can, arm yourself with as much information as you can get when you are, you know, visiting with your medical professionals.

And you can get a lot of that information on our website, autoimmune.org.

We have great resources, you know, tips for diagnosis, questions that you should ask when you're meeting with your doctor.

And then on the advocacy level as far as raising awareness among the general public, that's important as well.

And like I mentioned before, how important it is to build that community and be part of a community.

I really do encourage anyone dealing with an autoimmune disease to share your story.

You know, the more that we hear about autoimmune disease, not only does it, you know, raise raise the level of education and understanding among the public, but it also helps build that community.

It empowers us, it inspires us to, you know, to accept ourselves and to, you know, raise our voices, and let our voices be heard.

So I would really encourage everybody be to be not only an advocate for yourself on the medical side, but be an advocate in the general community as well.

And really help raise that awareness of autoimmune disease.

- Just like you're doing here, raising your hand.

Yes, I'll talk about it.

Spend times with your final comments, Jenn.

- [Jenn] Well, I just wanna say thank you for having us here and to be able to talk about this.

There's not been a lot of talk, especially I feel like in the West Michigan area, so thank you for having us and giving me the opportunity to speak about alopecia, and to anybody out there, know that you're not alone and stay strong.

- Hmm, yes.

And do you have any particular resources, Jenn?

I've got about a minute and a half left.

Besides the, of course, the Autoimmune Association to reach out to.

You mentioned a couple.

- [Jenn] wigstudio1.com has been amazing.

They have a wig and topper support group on Facebook.

I've learned a lot from them.

The confidence beyond hair loss too, excuse me.

There's a great place locally for people.

And if anybody ever has any questions, they're always welcome to reach out to me.

I'd be happy to talk to somebody.

- Nice, thank you for you.

In your closing, Colleen.

One more time, the website and I trust, again, talk about it, get the word out and get to know a new friend through your journeys together.

- [Colleen] Yeah, again, I wanna thank you Shelley, for inviting us to be here because this topic really is so important.

Autoimmune disease is on the rise, unfortunately.

So the more that we can talk about it and the more that we can, you know, share our stories is really just so important.

Again, our website is autoimmune.org, so I invite everybody just to check out our resources.

We do have webinars, we do have a summit coming up in October.

It's a virtual two day summit where we'll have expert speakers talking on various issues that affect the autoimmune community.

So there's a lot of resources out there.

And again, I just, you know, wanna say, share your story and help us build this community community.

- Hmm, great.

All right, Colleen and Jenn, you two keep in touch and we'll continue keeping the word out on this very important topic, not only about alopecia, but certainly autoimmune disorders and more.

So thanks, go get 'em on this day and we'll continue to beat your messenger.

There you are, so thank you for that.

And as always, thank you for listening and watching of course, this edition of "Family Health Matters" on behalf of your WGVU public media.

Have a great day, and again, thanks for supporting.

(uplifting music)