A Forgotten Condition: Pediatric Pain and Ehlers-Danlos Syndrome

first posted on LinkedIn April 2023 For the last 10 years, Donna Sullivan has advocated for children with complicated health conditions who suffer from chronic and sometimes extreme pain – including her own children.  She is part of a nationwide group of mothers united through the nonprofit, The Coalition Against Pediatric Pain (TCAPP), looking for a way to take …

Every mother’s nightmare…

What has the United States become when we separate children from their parents? That is the question I ask myself today. I've tweeted about some appalling actions of the Trump Administration and the Republican-led House and Senate before--(like threatening people with cancer and/or disabilities/pre-existing conditions with no health insurance). I've been trying to curb my …

Autism…Facts and Figures

Autism By the Numbers Take a look at the figures around this disorder...especially how it impacts income for parents. Caregivers need more help!

#HCHLITSS Chat Thursday February 26: Trends Redefining Healthcare This Year

An interesting article was posted over at Fortune.com last month. It discussed "5 trends that will redefine healthcare experience in 2015." http://fortune.com/2015/01/14/5-trends-that-will-redefine-your-healthcare-experience-in-2015/ None of these topic areas are brand new ideas. In fact, we've discussed several of them during previous #HCHLITSS chats. The idea here is that these areas are beginning to reach a critical …

From The Stars To The Turkey

Right after the Big Bang there was a long period of darkness with no stars--in fact, about 400 million years of darkness. Then clumps of hydrogen collapsed into the first stars and galaxies. In the process of fusion, the stars produced helium and glowed, lighting the universe. As those stars aged, and nuclear fusion continued, …

Pulling No Punches

This is an incredibly important message. Please watch this!

regrounding

It has been a crazy and exciting month for METAvivor! We have lots of big news, and the first is our new video. As you’ve come to expect, METAvivor tells it like it is. Tell me what you think!

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The cardiac miracle cure? Vitamin C, lysine and Dr. W. Gifford-Jones

There are charlatans out there. Beware of Vitamin C and lysine and Dr. W. Gifford-Jones. See the post below from Carolyn Thomas of HeartSisters.

Legacy of Love: Jayme’s Fund For Social Justice

In early 2013 I had the opportunity to work with a small non-profit in New Hampshire.  Working with the artwork of a young girl who died tragically, I got to know her mother, Caren.  Caren thought that she wanted to change the website she had had for the 10 years since her daughter's death.   …

Beginnings and Endings

April 1st remembrance

Health Communications and Health Advocacy

“Often when you think you’re at the end of something, you’re at the beginning of something else.  I’ve felt that many times.  My hope for all of us is that “the miles we go before we sleep” will be filled with all the feelings that come from deep caring-delight, sadness, joy, wisdom-and that in all the endings of our life, we will be able to see the new beginnings.” Fred Rogers

I know it is hard to believe that a grown woman would feel so connected to “Mr. Rogers’ Neighborhood.”  Actually I wasn’t all that big a fan of it as I was growing up.  But I found its calm and quiet atmosphere a welcome relief from the programs that my boy and I could have watched together when he was little.

Today I turn to Mr. Rogers again.  April Fool’s Day 2012 was a day of lemons for my…

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Facepalm

Please look at the list of to-do’s in this blog post!

The Sarcastic Boob

You all know my feelings about Susan G. Komen (see my commentary here, here, and here).  And it has always been puzzling to me that a woman whose sister supposedly died of breast cancer that metastasized would establish an organization that hardly mentions it and funds research for it far less than other organizations.

Komen (as an organization) possesses an innate hubris and avarice that allows them to treat those who infringe on their copyright with very heavy hands.  It has over 200 trademarks all of which are watched over and protected by a well paid legal counsel. Komen thinks nothing of strong-arming charities for use of the words “for the cure.”  In 2010, Komen legal counsel, Jonathan Blum said

“It’s never our goal to shut down a nonprofit,” he said, “and we try very hard to be reasonable, but it’s still our obligation to make sure…

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Lumley’s Lucky Day

In second grade my son Daniel had an assignment, to write and illustrate a story. He was worried about it so we went to the North Carolina Zoo for inspiration. Daniel wanted to photograph the animals and borrowed Dad's phone. At the alligators' habitat, he leaned in to get a good picture and dropped the …

2013 To 2014: Rekindle Another’s Spirit

In everyone's life, at some time, our inner fire goes out.  It is then burst into flame by an encounter with another human being.  We should all be thankful for those people who rekindle the inner spirit.  ~Albert Schweitzer Blogging for a company, Medivizor, and writing for the Health Communication, Health Literacy and Social Science …

Halloween and Domestic Violence Awareness Month

Lesley Pratt Bannatyne, explains that Halloween has changed. Prior to the 1970s, costumes for this children’s holiday featured astronauts, doctors, firefighters and nurses, allowing children to dress as heroes or people they aspired to become. Or they were of clowns, cats and dogs.  Then in 1968, the movie industry cancelled the production code that stopped …

Autumn

Just thought I’d share this again…beautiful fall!

Health Communications and Health Advocacy

by Kathleen Hoffman

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Asking the Hardest Questions

Jessica Rice is an amazing woman who asks the hard questions.

stage iv

This week I was honored to guest post for Scope, the blog published by Stanford Medicine. The original post appears here.

Since becoming ill, I’ve learned that I have the innate ability to make doctors very uncomfortable – squirmy, even. It’s surprising because I had assumed medical professionals with decades of experience have fielded every possible question a patient might ask.

But I suppose I’m not a typical patient. In November 2011, I was diagnosed with stage IV lung cancer (bronchioloalveolar carcinoma, a subset of adenocarcinoma) with extensive spread to the mediastinal and hilar lymph nodes. At the ripe old age of 30, I joined a very exclusive club of young, non-smoking women with this rare cancer.

My biopsies were immediately tested for genetic mutation and found to be ALK+. Crizotinib had received FDA approval a few months earlier, so it was the logical first course of action. The…

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Moms: You Are Not Alone

Lauren Hale (@unxpctdblessing)a two time postpartum mood disorder survivor who describes herself as having “turned peer supporter and  advocate for families struggling with Postpartum Mood Disorders [PMDs].”   She  also hosts #ppdchat  on Twitter for families struggling with PMDs.  She joined #hchlitss on March 1, 2012 to continue our discussion of mental health literacy. What is PPD …

No One is Alone in Anything

Hearing a diagnosis of “cancer” from your physician can be terrifying and isolating. Yet, Nancy Stordahl knows “no one is alone in anything.” And she’s been making sure of it by being there for others diagnosed with breast cancer. That’s because she’s been through it, twice: once as a caregiver and then as a patient …

A Few Health Funnies For 2013

1)2)3) HAPPY NEW YEAR 2013!

Random Notes After Tragedy

1)  I haven't brought myself to write about the horrible event in Connecticut.  We've kept our young one ignorant of what happened. 2)  I received this from a friend and felt I should post it....It is a direct quote. ASAN Statement on Media Reports Regarding Newtown, CT Shooting >December 14, 2012 "In response to recent …

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Donna Peach…To Silence

Donna Peach

 killing innocents / senseless no matter the age / or the time of year ♦

♦     ♦     ♦     ♦     ♦  

5 6 7 8

© 2004–2012 Donna Peach. All rights reserved.

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Autumn

by Kathleen Hoffman

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This post gives people a terrific list of USEFUL things to do during Breast Cancer Awareness Month.

MBCNbuzz

by Holly Raby, guest blogger

Spoiler alert- I’m going to reveal one of the latest Facebook games going around!

In past years, women have been asked to update their Facebook status with their bra color, the location of their purse, and other odd statuses in the name of Breast Cancer Awareness.  One of this year’s versions is to post a heart as your status.

This is supposed to promote Breast Cancer awareness.  Can anyone tell me how, since one of the rules of the game is “if anyone asks you why you have a heart as your status, don’t tell them”?  What’s the point?  How does that spread awareness?  And besides, isn’t everyone already aware of Breast Cancer?

How about something more useful?  If you want to do something meaningful for October, do something that will actually help yourself or someone else.  Don’t settle for posting a heart and buying…

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‘Twas the Night Before Christmas in the Lawyer’s Offices

A variety of foot apparel, e.g. stocking, socks, etc., had been affixed by and around the chimney in said House in the hope and/or belief that St. Nick a/k/a/ St. Nicholas a/k/a/ Santa Claus (hereinafter "Claus") would arrive at sometime thereafter. The minor residents, i.e. the children, of the aforementioned House, were located in their …

Patient-Centered Medicine Part 2

Patient-Centered Medicine Part 2.

Taming the beast? Patient centered healthcare

In the US, do you know what is spent per person on healthcare?   In 2008 dollars, it was $7,538 per person (or per capita).  The country with the next highest spending is Norway with $5003  per capita.  US spending is 20% greater than any other country in the world and two times what is spent …