8 Ways Health Advocates

& Bloggers are Making

a Difference

Speech by Clare Martorana

Reason 1: You fill in the gap

between doctors’ visits

If I had a friend with a life threatening blood clot, I’d tell them to talk

to their doctor about treatment options or where to get Vitamin K.

But if they needed deeper, more personal information, I’d tell them to

check out Sarah Wayne at the Blood Clot Recovery Network, where

she and others share their hopes and fears, offer wisdom to those

whose relationships are affected by the stress of chronic illness, and

who seek a place to find understanding and acceptance.

Reason 1: You fill in the gap

between doctors’ visits

And to anyone living with Multiple Sclerosis who thinks

their active days are over, I’d send them to David Lyons,

whose MS Fitness Challenge showcases tales of amazing

athleticism and perseverance. He helps people with MS

run races, lift weights, compete in fitness competitions, and

be their best selves.

Reason 2: You put the health

headlines in perspective

For example, on the controversy about portion sizes in

restaurants, I loved Karen’s take at Bitter Sweet Diabetes.

She says, “As a person with diabetes, I know I shouldn’t

eat a pancake twice the size of my head.

It just wouldn’t be healthy. But you know what? NOBODY

should eat a pancake that big. It isn’t healthy for

anyone. And the more I think about it, the more I believe a

restaurant shouldn’t even be serving pancakes that big.”

Reason 3: You are creating

Patient Advocates

David Emerson launched People Beating Cancer when he

was facing a diagnosis of multiple myeloma and wanted

more treatment options than conventional therapy could

offer. Today, People Beating Cancer is exactly what it

says it is: hundreds of informed, educated people on their

own cancer journeys sharing what they know with each

other.

So, if you are a cancer patient considering radiation

therapy for head and neck squamous-cell carcinoma, I’ve

got a tip for you: consult with your oncologist--and then

head to David’s site. There are amazing people there who

have been where you are going.

Reason 4: You help doctors give

their patients better care

Kelly Crabb, of the hashtag purple project, you tell it like it

is to be young, gorgeous, whip-smart -- and diagnosed with

Crohns and ulcerative colitis at 17!

You give an honest critique of the struggles you’ve faced

taking and paying for all that medication and spending so

many hours in ugly hospital rooms. You don’t like the

pictures gastroenterologists have around the offices --

images of ruptured colons and inflamed bowels.

They are upsetting, and you posted your opinion on your

blog. I suspect some of your doctors are rethinking their

office décor right now.

Reason 5: You help caregivers as

well as patients

Lori-Ann Holbrook, who writes the City Girl Flare blog, is

pretty eloquent on one especially painful side effect of

living with two autoimmune diseases -- the pain of

disappointing people you love. And you do such a great job

explaining that pain to friends and family members.

She writes: ”Disappointing others is an unfortunate fact of

life for autoimmune patients and this City Girl is no

exception. If you have an autoimmune patient in your life,

realize that we do not like to disappoint our employers,

family, friends or volunteer commitments. Sometimes,

there is just no way around it.”

Reason 5: You help caregivers as

well as patients

Ashley Smith’s powerful testimony in Overcoming

Schizophrenia does an incredible service to the millions of

people living with mental illness. She also did an incredible

service to all the parents out there who blame themselves

for their children’s medical issues.

She recently wrote, quite definitively: “schizophrenia is

NOT caused by bad parenting! The truth is, nobody is to

blame for mental illness... If you are ... called a bad parent

because your child has a mental illness, it is not true, and

you are not alone.”

Reason 6: You connect with

patients 24/7

True story: it’s the middle of the night. In rural New Zealand. And someone sends

out this message on Psych Central’s message board: Scared Right Now… I feel like

I'm drowning in anxiety, sadness, and complete, emptiness. And that there's nothing

I can do.. Twenty years ago, that message would have sunk like a stone.

But today, the community jumps right in to offer support, advice, and most of all, the

message that you are not alone!

To me, this a real revolution in health care. That kind of connection saves lives.

Because we can debate the pros and cons of using digital platforms to discuss

personal health information, we can debate privacy and rue quacks who join our

forums hawking salt water cures. But at the end of the day, you are here for each

other 24/7. And that’s healing.

Reason 7: You do it with humor

Many of you in this room have managed to make the most deadly serious topics

and make them laugh out loud funny. Take The Great Bowel Movement, a smart

alecky blog about Crohn’s and Colitis that invites Twitter followers to “join the

movement.”

I didn’t expect to laugh when I read Ann Silberman’s blog, But Doctor, I Hate Pink!

Ann says she is “Now livin' the Stage IV Lifestyle” and wrote a hilarious post

recently about trying to give a speech to a bunch of tech heads at South By

Southwest with chemo brain, and having a hard time of it. “Terminal Cancer can

be funny”, Ann says. “Just not for very long.”

Thank you for sharing so much humor, even when you are in pain. Laughter is the

best medicine, and the people in this room are prescribing it every day.

Reason 8: You do what you do for

love, not money

Our friends at CaringBridge are a fine example of the kind of selflessness so

evident in this room. They’ve created a platform where folks can share updates,

photos and videos and connect with others.

They built a great planner to coordinate and schedule tasks such as delivering

meals, providing childcare and arranging transportation. And they let family and

friends provide messages of love and hope through a CaringBridge Guestbook.

All of this is 100% free to users.

Reason 8: You do what you do for

love, not money

And a hats off to Raj at Castleman Disease

Collaborative Network, which has created a Global

Patient Registry to advance diagnosis and

management of Castleman disease and established a

unique ICD-10 code to help doctors get patients care

and coverage.

No one is going to make a bazillion dollars finding a

cure for Castleman’s. But the 4,000 or so patients who

have it sure appreciate what you do.

About Clare Martorana

Clare Martorana is Executive Vice President & General

Manager, Consumer Health & Wellness at Everyday

Health. Clare is responsible for leading the company’s

consumer-focused health and wellness businesses,

including the continued growth of the company's

flagship property, EverydayHealth.com and the

company's digital subscription programs for popular

brands such as The South Beach Diet, the Mayo Clinic

Diet and Jillian Michaels.

Read more about Clare Martorana.