August is

Don’t Be a Bully Month

Cover photo: Rick Guidotti and POSITIVE EXPOSURE's Collaboration with The Wilhelm Foundation: THE UNDIAGNOSED Initiative

August Feature

Undiagnosed is a Diagnosis

Helen Journal’s cover girl for this month is Lala.  Lala is 13-years old and lives in Bamako, Mali. She loves cooking. studying and playing games with friends. She brings happiness and joy to her family every day! 

The UNDIAGNOSED initiative aims to raise awareness about all the people living with Undiagnosed Diseases worldwide.

Founders, Helene and Mikk Cederroth, lost their three youngest children, Wilhelm, 16 years, Hugo, 10 years, and Emma, 6 years, to a degenerative undiagnosed disease. They founded the Wilhelm Foundation to prevent any other family from feeling as alone as they did, searching for a diagnosis. 

The Wilhelm Foundation’s mission: To build a community and network of healthcare providers devoted to seeking a diagnosis for individuals and families living without a diagnosis anywhere in the world.

The Wilhelm Foundation is a strategic partner of the Chan Zuckerberg Initiative’s Rare As One Project and has hosted twelve International Conferences on Rare and Undiagnosed Diseases. The Wilhelm Foundation drives the Undiagnosed Diseases Network International and is the pioneer of the Undiagnosed Hackathon.

Alyse Knudsen Alyse Knudsen

HELEN Journal is PAOH's Official Journal

HELEN Journal will very soon be the official publication of PAOH. But we will still have close ties with the AADMD, along with a host of other respected and influential national disability organizations.

Read More
Alyse Knudsen Alyse Knudsen

Three Was Just A Start

Representatives from around the world made it abundantly clear that the lack of competent healthcare for people with complex disabilities was a global experience. I was encouraged to disseminate my address so that it might ignite a much needed and much overdue conversation that might lead to corrective action.

Read More
Alyse Knudsen Alyse Knudsen

The Razor, the Zebra and the Need to Know

There is an old medical adage that suggests, “there are 10,000 diseases and just 500 cures.”  The problem is to ascertain (with a high degree of certainty) which belongs to which patient. One of the tools available to the astute clinician is the “differential diagnosis.”

Read More
Alyse Knudsen Alyse Knudsen

From The Stacks

There are literally thousands of journals published around the world that relate to the disability community.  It is virtually impossible to capture even a fraction of them. HELEN receives "stacks" of journals and selectively earmarks what we feel are "must read" articles of interest for our readers. It's a HELEN perk!

Read More
Alyse Knudsen Alyse Knudsen

Unlocking Behaviors: Fluid Seeking

Polydipsia is an abnormal urge to drink lots of fluids most or all the time. One medical condition that can cause people to feel excessively thirsty is uncontrolled diabetes.

Read More
Alyse Knudsen Alyse Knudsen

The Familiar Yet Strange Case of Neurodiversity and Bullying

Multiple surveys seem to consistently report that children who are neurodivergent are significantly more likely to face bullying than their peers. This still leaves us with the question of “why?” Even with the myriad of anti-bullying campaigns and attempts to raise awareness and address bullying, why does it continue? An unfortunate reality may be that bullying is as hard wired into us as a species as are cooperation and unity.

Read More