Rare Disease Archives

This year for Pain News Network I am working on a Rare Disease series. I have been writing for PNN, going on 7 years now. I felt compelled to write about rare conditions specifically this year.

Some I know about have family or personal friends who live with these conditions. Others I am learning about for the first time.

With over 7,000 rare diseases and limited treatments, being difficult to diagnose, and not having spotlights shine as bring on them for society, it felt like a perfect fit. I love with multiple rare diseases myself so this has a special place in my heart. So for the rest of the year, I will continue to update this particular blog and you will see it jump up to the top of the blog page so that you can learn along with me to be introduced to 12 rare diseases.

2021 Rare Disease Series

January – Paget’s Disease
February – Alexander Disease
March – X-Linked Hypophosphatemia
April – Cauda Equina Syndrome
May – Vulvodynia
June – Dupuytren’s Contractures
July – Transverse Myelitis
Aug – Friedreich’s Ataxia
Sept – Sarcoidosis
Oct – Asplenia
Nov – Coccidioidomycosis

Drop me a comment to let me know which one was most fascinating to you, connected with you.

My hope for all those living with a rare condition (or more than one) is that a cure will be found someday. In the meantime, we can do our part to help lower stigma about rare conditions by advocating for research and meaningful support for the millions of people who live with them.

Barby Ingle lives with reflex sympathetic dystrophy (RSD), migralepsy and endometriosis. Barby is a chronic pain educator, patient advocate, and president of the International Pain Foundation. She is also a motivational speaker and best-selling author on pain topics.

This year I believe I received my most nominations from the WEGO Health awards – a total of 20 (in 13 categories). It is always an honor to be recognized by other advocates in the health world. I also made 38 nominations of other health-stars that I know and look forward to the celebrations to come. During the month of July 2020 there are endorsements of all of the nominees. If my advocacy efforts have positively impacted you, I ask for your endorsement in hopes of winning $500 towards my mission. Visit my profile: https://www.wegohealth.com/barbyi/awards. You can endorse me for 1 or all of the categorizes.

Here is what was said about me in the nominations, some were anonymous and some were left by names of other advocates who are health-stars in their own right. Thank you to each of you for your love, respect, and honors.

Advocating for Another

“Barby raises awareness to better the lives of all facing rare and chronic life health challenges. Barby balances life as a patient, caregiver, mentor and friend, all while advocating on behalf others through blogging, media and legislation. ”

“Barby is a force to be reckoned with. Her tireless dedication to the patient voice is a beacon of hope and rallying cry all patient leaders aspire to possess” — Ashley Levinson, CMA, CST

Best in Show: Blog

“Barby runs two blog sites one personally as an advocate and one community blog for those living with chronic pain. She is also asked to contribute to others blogs and does so consistently throughout the year. Barby continues to publish new content and elaborate on relevant societal issues through blogging.”

Best in Show: Community

“Barby runs multiple Facebook pages giving her multiple opportunities to connect, converse, and create networks of patients, caregivers and industry leaders. Between all of her pages and support groups on Facebook barby has a network of over 75,000 and she stands strong in a digital space as a personally verified leader on Facebook. ” — Ken Taylor

Best in Show: Facebook

“Barby is a cheerleader of life. She celebrates the online rare & pain communities & leaders at every chance. She creates an inviting digital space for newcomers while maintaining a safe place that people have come to respect and rely on for 14 years. Barby is a leader who has mastered mang, moderation & engagement with a purpose to support others.”

“I’m nominating Barby for her Advocacy in the chronic pain community for sharing valuable resources to patients globally and for being part of a great support network and community. ” — Judith Flanagan , Patient Advocate

Best in Show: Instagram

“Barby is curating thought-provoking images, engaging videos, entertaining Insta-stories, and helpful IGTV sessions aimed at sharing her story and supporting others, between running of her personal and nonprofit pages. Barby is an endless stream of support, inspiration and community! ”

Best in Show: Podcast

“Barby is a co-host on the digital reality show The Ken & Barby show where she advocates & openly shares her own health stories. She explores community topics, while engaging live with viewers. She also hosts monthly educationally based webinars on multiple platforms. Barby is a feel-good belly laugh of fun who can get serious messages out positively”

Best in Show: Twitter

“Barby is the patient leader making the most out of the 260-character limit on twitter! She hosts 4-6 twitter chats a year, teaches others how to manage them, and participates in weekly chats on topics that are important to her as an advocate. She is always teaching or sharing words of encouragement, and shines as a patient leader on Twitter.”

“Always posting great info, has iPain foundation, constant cheerleading for other advocates”

Best in Show: Youtube

“Of all of the social media platforms, Barby has been using this one the longest. She has earned a YouTube Partner spot & maintained the high standards that come with being a partner since 2015. Barby is never shy getting in front of the camera to share her story even on her worst pain days. She proves video is powerful to connect w a lasting impact”

Best Team Performance

“Barby has done amazing work bringing patient leaders together for a common cause” — Joanna Tierno

Healthcare Collaborator

“Barby has been a key healthcare industry patient expert since 2010 working with many pharmaceutical companies, durable medical equipment companies and clinical trial companies throughout the years. She shows how the voice of the patient is valuable and needed in all aspects of healthcare!”

“ Barby is an incredible advocate for the pain community and all patients across the country. She works tirelessly despite her own health issues. Her collaborations bring patient leaders together to make one more powerful voice. She is a true inspiration. ” — Joanna Tierno

Hilarious Patient Leader

“Barby has knows that laughter is the best medicine. She created the International Pain Foundations’ Comic Pain Relief event. At CPR, laughter brings people together to forget our healthcare problems and just laugh for healing. Although she is not the quickest witted, she is sharp & her humor makes even the toughest of topics more enjoyable. ”

Lifetime Achievement

“Barby is so dynamic that her body of work in advocacy is many pages (books) long. This is one category that combines all of her attributes and her years of efforts. This is the best fitted category to explain her achievements in advocacy, mentoring, education, awareness and access to care. She stands strong as a role model for the health community.”

“Barby is so amazing and always looking to help others. She will always be there for others whenever asked. Her help with chronic pain has really helped so many. ” — Frank Rivera

“There aren’t enough words to describe this amazing inspirational leader! She is always there to support, encourage, and inspire others to live the best life they possibly can in spite of chronic illness. ”

“True inspiration, true advocate and someone to look up to and admire for the energy and spirit she still manages to put into life no matter what it throws at her.” — Carole Sian Scrafton Ba hons MBS, Ba (hons) & MBS distinction

Patient Leader Hero

“I have watched Barby change the lives of others consistently since meeting her in 2003 when she changed my life. Barby goes above and beyond for the rare and chronic communities and has influence has truly made an impact and seems endless. Her dedication is like no other human I have met in my life. She ignites a spark for + change in everyone. ”

District	City	Date
Gila County	Globe	4/1/2023
Greenlee County	Clifton	4/1/2023
Graham County	Safford	4/2/2023
Cochise County	Bisbee	4/2/2023
Santa Cruz County	Nogales	4/3/2023
Pima County	Tucson	4/3/2023
Yuma County	Yuma	4/4/2023
La Paz County	Parker	4/4/2023
Mohave County	Kingman	5/10/2023
Yavapai County	Prescott	5/10/2023
Coconino County	Flagstaff	5/11/2023
Navajo County	Holbrook	5/11/2023
Apache County	St Johns	5/12/2023
Maricopa County	Phoenix	6/3/2023
Pinal County	Apache Junction	6/17/2023

Rare Disease

Upcoming events in Arizona for Pain and Rare Community

Rare Disease Series by Barby

2021 Rare Disease Series

WEGO Health Nominations for 2020