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 …

Beating back cancer one small molecule at a time

Many of the targeted therapies for cancers are small molecules created by the “drug hunters” of the pharmaceutical industry.

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 …

Meredith Hurston, #HCHLITSS Guest September 17, 2015

We are very excited to have as our guest on #HCHLITSS Thursday September 17, 2015 Meredith Hurston. Here is a short bio. Meredith Hurston is a native of Flint, MI and finished her undergraduate studies at The University of Michigan-Flint. After completing a graduate degree in healthcare administration, she now works at the nation’s top …

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!

View original post

On Losing One’s Bladder

What happens when the physician becomes the patient? What happens when the physician is a urologist and the disease he has, is something he's treated before? Joseph Salisz can explain what happens because he’s been there. He describes his profession, “I fix plumbing problems.” And the “ironic twist,” as he puts it, is that he …

6 Reality Checks: The Bootless Have No Bootstraps

"…it is a cruel jest to say to a bootless man that he ought to lift himself by his own bootstraps.” --ML King Jr I don’t know why I’m surprised with comments that prove many people don’t know how to walk in someone else’s shoes. After sharing about the problem of paying for long term …

From Bewitchment to Genetics: Cystic Fibrosis and Emily’s Entourage

"If it tastes salty when someone is kissed on the brow, then this person is hexed” (bewitched).” “The child will soon die whose brow tastes salty when kissed.” Cystic Fibrosis and Emily's Entourage Bewitched children…with salty skin died.   For centuries, children with Cystic Fibrosis lived short, terrible lives.  It took until 1954 for something to …

Why Parents MUST NOT Stop!

Parents of Children with Special Needs I am constantly amazed at the bravery of some parents who are activists for their children in schools in the US. There are so many exhausted parents looking desperately for help in a place that is mandated by US law to help, public schools. “I Am Adam Lanza’s Mother” …

Schools on Wheels: Helping Homeless Children in Massachusetts

A few years ago I spoke with a group of mothers who were concerned about their children's school.  The neighborhood they lived in is called "transitional" and the school had an 85% turnover rate.  That means that 85% of the children who started school in the beginning of the year didn't finish the school year …

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…

View original post 263 more words

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…

View original post 345 more words

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 …

Patient Advocate–Pat Mastors

Empowered Through Loss Creating A Patient Advocate Pat Mastors', patient advocate, “medical awakening” came with the tragic loss of her father. “My father, an otherwise healthy 76-year-old, fell down stairs at home and fractured vertebra in the neck. Surgery to fix it went well. But his intestines burst two days post-op. Later we learned it …

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 …

Infographic

When Patients Share Internet Health Information With Their Physicians This is an infographic that I created to describe a short "survey" that I conducted for a week in October, 2013 while working for Medivizor.com. The full description of the survey is found here: How Patients Discuss Internet Health Information With Their Doctors.

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

View original post

Being Invisible Girls

What would you do if you were seated on a crowded subway and saw a little girl falling asleep standing up? “I think: someone needs to hold that little girl because she’s sleepy.  And all of a sudden the little girl looks right at me.  So  I hold my hands out and she climbed on …

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…

View original post 566 more words

Sea-to-Sea: METAvivor and Metastatic Breast Cancer Awareness

“…the biggest problem in the breast cancer business, and make no mistake, it is big business, is the fact that we’ve done nothing to change the death rate. NOTHING.” ~AnneMarie Ciccarella No Change in Death Rate From Breast Cancer Since 1970Much media attention is brought to bear to advertise the breakthroughs in breast cancer research yet …

The Frog List

“I can use all the prayers I can get!” In August 2011, Jessica Rice had a little cough—‘nothing to worry about’--and a low grade fever that kept her out of work a couple of days. By early October the cough became “productive.”  She did what any healthy, 30 year old Vice President of Global Projects …

Anyone Can Get Lung Cancer

“My beloved mother was diagnosed with Stage IIIb non-small cell lung cancer in early June, 2012,” says Deana Hendrickson. “I knew virtually nothing about it…was heartbroken, and frankly angry, to learn that over half of those with lung cancer die within a year of diagnosis.”The estimated new cases and deaths from non-small cell and small cell …

Always talk. Always share. Always engage.

“Always talk. Always share. Always engage,” says Anton J. Gunn, Director of External Affairs in the Office of Intergovernmental and External Affairs (IEA) at the U.S. Department of Health and Human Services (HHS). Mr. Gunn’s long title might put you off, but there is nothing off-putting about this energetic former college football lineman when he is …

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 …

Three Activists on Awareness Months

February is National Heart Health Month, April is National Autism Awareness Month and October is National Breast Cancer Awareness Month.  How do those who are affected feel about these awareness campaigns?   Health Communications, health literacy and social sciences tweetchat invited three health activists to begin to answer this question.   AnneMarie Ciccarella (@chemobrainfog) started …

Reach For Your Best!

As a 4th grader in Jackson Mississippi, Ivor stood outside a hospital room and listened to her father scream, “Let me go…let me go...” as three men held him down for a spinal tap.  In that moment, she made her decision to become a physician, “I didn’t want to feel that disempowered again,” she states.  …

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 …

It’s Okay To Laugh, Cry and Feel Uncertain

In 1990, Robert Harris and his wife and best friend, Cindy, had been married 10 years and had two boys, ages 2 and 5.  One day, Cindy complained of pain in her knee.  After going to an orthopedic surgeon expecting the usual sports related diagnosis, their world changed. Physicians discovered that she had Non-Hodgkin’s Lymphoma. …

Trying to Change the World for the Better: Meet Medivizor

“Medivizor’s vision is to improve the lives of people with serious medical conditions and those who care for them and to effectively apply software and the social web in the field of health for the betterment of humanity. This might sound like a lofty goal, and indeed, it is. We want to change the world for …

Bringing Back the Story: Wellbound Storytellers and Health Empowerment

The Navajo Sugar Monster Long ago the Holy People predicted that a monster would take over the Navajos. Our mothers and fathers would change...No longer were man and woman together. One after another this monster ate away their faces. It gnawed away Navajo identity....Everything turned from light to dark....Words ceased to exist. The Holy People …

“There Is No Health Without Mental Health”

“There is no health without mental health. I'd like crisis care to be linked into your regular healthcare, so your provider can follow-up long-term.” “Suicide is the 10th leading cause of death. The third for some children. It’s a public health issue.” April Foreman, PhD Dr. April Foreman is not your average psychologist. She is …

Reporters: Give ‘Em A Break

The people of Boston, like the marathoners, are resilient and resourceful. We cannot be broken by a cowardly act of terror. We will come back from this. Senator Elizabeth Warren Patriot's Day is a holiday in Massachusetts celebrating the anniversary of the April 19th Battle of Lexington and Concord during the American Revolution. It is …

Wow! What An Incredible Climate Change Infographic

This is an infographic created by Allison Lee. It comes from the website Learn Stuff.  Check out her huge list of sources at the bottom of the infographic.  WOW!

Physicians Need Social Media

When patients hear the term “The Empowered Doctor” they may ask “I thought physicians were empowered. Staff, systems ,procedures are controlled by them. What am I missing ?”**  “Doctors in their prime are going out of business,” says Dr. Simon Sikorski, President of Empowered Doctor Inc.   Dr. Sikorski believes that physicians need to realize they …

“A Needed Response”

Public health is about keeping people safe...be it through immunizations, assuring clean water or preventing gun violence.  Here is another safety issue we need to address: A story about a friend... There was once a very protected girl.  She did not date until she was 18.   She was an innocent.  She told the boy …

From Outrage To Action: Dian (CJ) Corneliussen-James and METAvivor

“I started METAvivor out of outrage.” Dian (CJ) Corneliussen-James Co-Founder of METAvivor Research and Support, Inc Born from the outrage of four women, METAvivor Research and Support, Inc. is a non-profit with a purpose--To increase research funding for metastatic cancer. Dian (CJ) Corneliussen-James  is one of those women.   A self-described shy child, Ms. Corneliussen-James  (or …

Brain Awareness: What are Strokes and TIAs?

 “Of 100 people who have a stroke: 10 recover completely, 25 have minor impairment, 40 will have moderate impairment, 10 will require long term care and 15 will die.” David Turkel-Parrella, MD Dr. David Turkel-Parrella, a Neurologist and Neuro-Intervention Fellow at the University of Toronto in Canada, knows about Stroke.  His recent research  investigates factors …

Pharmacists As Partners

You know those little dosage cups that are on all the children’s over the counter medications…One study from 2010 found that only 30% of those using these cups with printed markings gave accurate dosages.  Large errors (40% off ) were made by ¼ of the parents using the printed cup.  In fact cups were associated …

Paying for care: What happens to 21 year old family members with severe autism after graduating from high school? Part 2

It costs over $75,000 per year to serve one adult with autism and expenses can go as high as $200,000 per year per person.  If that isn't scary, just read on. Locating residential homes that are specifically for autism is challenging.  One of the best resources available for finding residential providers is The National Association …

PTSD and Cancer Diagnosis

Reading blogs by those who have been diagnosed with cancer is illuminating.  At least for some breast cancer patient blogs, their experience has been confirmed by recently reported research. A telephone survey of women who received breast cancer diagnosis confirms that almost 1/4 report symptoms of Post Traumatic Stress Disorder.  Alfred I. Neugut, MD, PhD …

Share this:

Leading Breast Cancer Experts report on prevention of cancer through reducing exposures to chemicals and radiation in our environment. We can help to move this information forward into an action plan within the Obama administration by following a link described in Susan’s blog post. As Margaret Mead so eloquently stated, “Never doubt that a small group of thoughtful, committed, citizens can change the world. Indeed, it is the only thing that ever has.”

A4BC Founder's Blog

Yesterday I put an article in my Breast Cancer Newspaper about a federal committee of leading breast cancer experts that released a report about reducing our exposures to chemicals and radiation in our environment. Today I received an email from Jeanne Rizzo, R.N.
President and CEO of the Breast Cancer Fund stating that she is serves as a co-chair with the federal committee.

The report, “Breast Cancer and the Environment: Prioritizing Prevention,” concludes that “preventing environmental exposures is the most promising path to decrease incidence of the disease, and calls for a national breast cancer prevention strategy.”

The report’s first stop is the desk of U.S. Secretary of Health and Human Services Kathleen Sebelius, who must create an action plan to implement the report. This action plan can lay the groundwork for a national prevention strategy that will require commitment and hard work from the Obama administration and Congress.”

Write…

View original post 127 more words

The Power of Patient Blogs: A Window Into the Lived Experience

“Patient blogs reveal the true extent of the impact of cancer on finances, work practices, family life…they offer a window into the lived experience of the patient.” ~Marie Ennis-O’Connor When you are 34 years old, lecturing and working in Public Relations and Marketing at a University, you aren’t thinking about cancer.  Yet in 2004, Marie …

A “Talking Dog” Keeps Seniors Safe and Happy: Introducing GeriJoy

Ever talked to your dog and wished she would talk back?  Well, now there are some seniors who are talking to their dogs and getting an answer.  It’s all because of the hard work and dedication of an MIT Mechanical Engineer, now entrepreneur with a big idea. GeriJoy is the brainchild of Victor Wang and …

What Inspires You to Get Healthy? Hea!thrageous Is Listening

Did you know that nearly 40% of the doctors that are in practice right now are 55 years old or older?  About a third of the present nursing workforce is 50 years or older and 55% are considering retirement in the next 10 years.  That comes to a shortage of about 100,000 physicians and 300,000 …