Accessibility links

Breaking News

Re-thinking Down Syndrome


((PKG)) DOWN SYNDROME AND INFLAMMATION
((Filmed before the advent of COVID-19 social distancing
practices))
((Banner: Re-thinking Down Syndrome))
((Reporter/Camera: Shelley Schlender))
((Adapted by: Martin Secrest))
((Map: Denver, Colorado))
((Main characters: 1 female, 1 male))
((Sub character: 1 female))
((NATS))
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
If you see Megan and I together, we are up to something.
((Scientist))
Hi, Megan!
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Hi.
((Popup Banner: The Linda Crnic Institute for Down Syndrome
conducts advanced research on Down syndrome))
((Courtesy: Global Down Syndrome Foundation))
((Popup Banner: Dr. Espinosa is the institute's director and a
longtime friend of Born This Way TV star, Megan Bomgaars))
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Hes running the show because hes a star, right here.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
Oh, sorry. The person who won an Emmy is not me.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
I think it could be you.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
Multiple Emmys, I should say.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
It could be you though. It might be you.
((Courtesy: Born This Way, A&E Channel))
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Im Megan Bomgaars. I want to help young adults, like myself,
how to love themselves and follow their dreams. My goal for
myself is to be on the cover of Vogue.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
A lot of people with Down syndrome, there are some immune
cells that are hyperactive, too active, going overboard. But there
are other aspects of the immune system that are actually
exhausted. And if you think about it..
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Like me. I am.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
Youre exhausted? Very good, because maybe youve been
doing too much of something.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Yes.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Ive known Dr. Espinosa for a very long time.
((Courtesy: Global Down Syndrome Foundation))
((Kris Bomgaars, Megans Mother))
My daughter, Megan, presented with Dr. Espinosa as part of the
Global Down Syndrome Foundation team in Barcelona, where
she was able to present her life story and also present some of
what her medical challenges have been.
((Courtesy: Kris Bomgaars))
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
My mom told me in first grade that I have celiac disease. I cant
have wheat, I cant have dairy and I cannot have gluten. My
teacher told me I had a bad behavior problem because I had their
school food and they were not gluten-free foods. So, that's why
my mom came back and told my teachers, I don't have a behavior
problem. It's the school food that gets me sick.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
Thats a very good story of how sometimes people mistake or
misinterpret whats happening to a person with Down syndrome
due to lack of knowledge. It wasn't a behavioral thing, part of the
Down syndrome spectrum. No, no, no. It was something related
to diet.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Yes.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
And I wonder how many other examples are like that, where
maybe..
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Yeah, me too.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
something in the diet or something, lack of sleep or
obstructive sleep apnea or other health issues have been ignored
or minimized, thinking that, Oh, well, that is Down
syndrome. Not true. Down syndrome needs to be broken down
into these various conditions, these various aspects.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
And then in the school food because I know I don't want to do that
again. No, I can't eat that stuff.
((Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
If the school food has gluten, you know, it's going to trigger your
celiac disease and then it may look like a behavioral issue but
actually it's a diet issue.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
Yeah.
((Kris Bomgaars, Megans Mother))
She has hypothyroidism. She has psoriasis. There are concerns
that there will be other immune system challenges coming up in
her future. So, that's always in the back of my mind. How is this
research going to help, you know, these main issues that she has
right now and potential immune system issues in the future?
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
So, I'm pretty confident that as you are trying to manage your
celiac, you may also be reducing inflammation that affects other
organs.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
The interferon response can be blocked or attenuated in a
number of ways. One way is with these drugs called JAK
Inhibitors. These JAK Inhibitors are doing very well in clinical
trials for treatment of autoimmune skin disorders such as alopecia
areata, this autoimmune skin disorder where the immune system
attacks the hair follicle and then you become bald.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
I do not want to get bald. Sometimes, when I do my hair, I'll do
stuff like, I feel like I'm going to lose my hair. I'm like, I need to
keep my hair. So, I keep my hair.
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
It looks great.
((Courtesy: Global Down Syndrome Foundation))
((Dr. Joaquin Espinosa, Director, Crnic Institute for Down
Syndrome))
The mission of our research, the mission of the Crnic Institute is
to improve the lives of all people with Down syndrome through
biomedical research. There could be new diagnostics. There
could be new therapies. Early diagnostics, you had to remember
also, it's very important for you to know that you had celiac
disease. It changed your life. You had all kinds of benefits. So,
we need to come out with quick, effective ways of diagnosing
these conditions that are more common in people with Down
syndrome, such as autoimmune disorders, neurological disorders,
other things. The sooner the doctors can learn that something is
about to develop, the better they can intervene.
((Megan Bomgaars, TV Star and Down Syndrome Self-
Advocate))
And I know things, a lot of things from him. And what he does, he
saves the country and he saves the world. Yes.
XS
SM
MD
LG