Why do famous people avoid CHD?

There are two questions I have:

Why do famous people avoid CHD?

Why do famous people who do come out about CHD, avoid using the term CHD?

It seems socially acceptable to donate and help so many other illnesses. Why are people so afraid to help us? I know for starters it's in our name - CHD - some people call it Disease, some people call it Defect. If we can't even get our own name right, there's a problem right there. Also, it has the term "HEART DISEASE" in it and heart "defect" doesn't sound like it means anything serious. It sounds like oh cool you have a defect (assuming it's fixable) and Congenital Heart DISEASE is ALWAYS taken as Acquired Heart Disease.

I strongly believe many of our issues as a community and why we aren't getting the awareness and understanding we need to raise money for research, etc, are centered around us being stuck in this NAME issue.

If we weren't named Congenital Heart DISEASE, I guarantee AHA wouldn't want anything to do with us considering we are two completely different illnesses, but I'm not getting into that on this blog lol. ;P

There are a few issues I have put off writing or speaking about but I guess it's time.

Please share your thoughts.

I don't think people understand how ESSENTIAL and also detrimental the NAME of our condition is and can be.

It's too many words, it's confusing, no one knows what Congenital is (I learned when I was like 22 lol), and then no one can agree on DEFECT or DISEASE.

This is not an issue in any other disabled community to my knowledge so whoever named CHD is making it complicated lol!

After seeing a video about Shaun White and him saying he has TOF, but not CHD, it pushed me to finally write a blog and make a video about this.

The headline is called "Shaun White inspires kids with heart conditions" as if we don't have a name?

WHY does he keep avoiding "CHD" at all costs?

here's the article and video he talks about tof, never saying CHD:


Ellen brought on a child with HLHS and didn't say CHD, Ed Helms said he has TOF, refused to say CHD.

Jimmy Kimmel said Congenital Heart Defect a few times but didn't push it, but did push saying "heart condition called TOF."

In TV shows and movies about any child with CHD, they call it "heart condition" or a heart defect but are not saying the full name which is always so confusing to me. It makes me feel like they are all embarrassed or something? I don't know honestly because I don't understand it.

What are your thoughts? Why do you think they do this?

I hope you understand my confusion.. :/

What can we do about this?

I have been wondering for years WHY don't famous CHD people help us?

And they don't have to, it's their life and that's fine if they want to keep it private and I understand that even though it does feel hurtful, logically they're not doing anything "wrong."

However, what I do feel uneasy and confused about is if you ARE publicly talking about your condition, WHY AREN'T YOU USING THE NAME OF YOUR CONDITION?

If I were famous I can tell you right now, you couldn't pass one bench, drive on one highway, or go to one hospital without seeing tons of CHD stuff and signs all over the US.

People who are famous with CHD themselves or have CHD children support other disabilities because they are easily understood and recognized by the public. Also because there is usually ONE or two huge organizations for each disability such as St. Judes, American Cancer Society, Lupus Foundation, CP, CF, MS, etc yet with CHD we dont have ONE or two, we have a bunch scattered all over the place.

We need people in power and millions of dollars to help us and that's just the truth yet these are the exact people who are too ashamed of their CHD to help us. What does that teach the CHD children? That their role models are too embarrassed to help us but they do cancer commercials. It's just sending a very confusing message. It's okay he did cancer commercials, but why not help us too then if you (Shaun White, Jimmy Kimmel, Ed Helms, Ellen with HLHS kid on her show, etc) are talking about INDIVIDUAL CHDs, then WHY can't you say the UMBRELLA NAME of all of those conditions, which is CHD - Congenital Heart Disease.

I just want to know Why can't they say CHD, Congenital Heart Disease, or if you just have a defect or two then why not say Congenital Heart Defect?

I want to know why do famous people avoid using the term CHD?

That's like Selena Gomez listing all of her symptoms yet never saying "lupus." That wouldn't make any sense.

If people JUST said "raising awareness for HLHS, TGA, HRHS, TOF," etc we as a CHD COMMUNITY would never get anywhere.

CHD is our umbrella term. We NEED this to raise awareness.

People don't need to know every detail of our individual diagnoses, they just need to know you have a serious, or not serious, form of CHD.

The public will understand and remember ONE name.

Same with Cancers. If they did that without using their umbrella term of cancer, they would never have gotten anywhere with all of the long names of their diagnoses just like us.

DEAR FAMOUS PEOPLE: Why aren't you saying you or your child has CHD?

Why are you just calling it the type of CHD?

Please start using the CHD included in the explanation to help us raise awareness for CHD. <3

“Never doubt that a small group of thoughtful, committed citizens can change the world.

Indeed, it’s the only thing that ever has.”

– Margaret Mead

Thank you for your support.

Thank you for existing.

Your existence gives me hope.

Educate. Inspire. Heal.

Copyright © 2018 | By Stephanie Romer


INSTAGRAM: https://www.instagram.com/chdlegacy/

YOUTUBE: https://www.youtube.com/user/StephanieRomer




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