debilitating Archives - Good News!

STRUGGLE: Regaining Control From An Often Misunderstood And Misdiagnosed Skin Condition

Austin Tang — Mon, 20 Oct 2025 20:29:58 +0000

Listen to “STRUGGLE: Regaining Control From An Often Misunderstood And Misdiagnosed Skin Condition” on Spreaker.

STRUGGLE: Regaining Control From An Often Misunderstood And Misdiagnosed Skin Condition

Imagine living with a condition that typically takes an average of 10 years to diagnose, with more than three misdiagnoses along the way.1 This is the reality for many living with hidradenitis suppurativa (HS).

HS is a chronic, painful, and potentially debilitating inflammatory skin disease that is characterized by inflamed nodules that resemble boils and abscesses.2-5 These lesions typically appear in areas where the skin rubs together, like the armpits, groin area, and inner thighs.4-5 HS lesions often heal slowly and recur frequently, leading to tunnels under the skin and permanent scarring.4-5

The impact of HS extends beyond physical symptoms.6-7 People living with HS experience stigma that affects their relationships, education, and careers – often preventing them from seeking treatment.6-7

Dr. Angela J. Lamb, a renowned dermatologist specializing in HS, will discuss the symptoms and impact of HS, as well as the various treatment options available. Dr. Lamb will be joined by Imani, a social media influencer and HS patient, who will talk about how individuals living with HS can partner with their dermatologist to begin reclaiming their lives while managing this challenging skin condition.

#MottsWorld

The post STRUGGLE: Regaining Control From An Often Misunderstood And Misdiagnosed Skin Condition appeared first on Good News!.

WHAT HAPPENS WHEN YOUR CHILD HAS A RARE AND DEBILITATING DISORDER CALLED RETT SYNDROME.

Austin Tang — Tue, 28 Nov 2023 19:12:22 +0000

Listen to “WHAT HAPPENS WHEN YOUR CHILD HAS A RARE AND DEBILITATING DISORDER CALLED RETT SYNDROME. ” on Spreaker.

IMAGINE THAT YOUR CHILD REACHES THEIR DEVELOMENTAL MILESTONES AS EXPECTED FOR THE FIRST SIX TO 18-MONTHS OF THEIR LIFE. THEN, WITHOUT WARNING, STOPS PROGRESSING AND BEGINS TO LOSE THE COMMUNICATION AND MOTOR SKILLS THEY’VE JUST STARTED TO LEARN.
THAT’S WHAT HAPPENS WHEN YOUR CHILD HAS A RARE AND DEBILITATING DISORDER CALLED RETT SYNDROME.

HERE DURING OCTOBER’S RETT SYNDROME AWARENESS MONTH TO DISCUSS THE CONDITION, ITS IMPACT ON FAMILIES, AND THE FDA APPROVAL EARLIER THIS YEAR OF THE FIRST DRUG TO TREAT THIS SYNDROME THAT OFFERS NEW HOPE FOR PATIENTS, ARE DR. STEVEN SKINNER AND KASSIE, WHOSE TWIN DAUGHTERS BOTH LIVE WITH RETT SYNDROME.

Dr. Skinner:
· What is Rett syndrome? And what is the impact of the symptoms on those living with this condition?
· What do parents need to know about the first treatment option approved by the FDA for Rett syndrome?
· Where can people go to learn more?

Kassie:
· What prompted you to see a doctor for your daughters and what challenges have you and your daughters faced living with Rett syndrome as it progressed?
· What does it mean to you and your daughters now that there is the first-ever approved treatment for Rett syndrome?

http://daybue.com/

#rettsyndrome #rett #drstevenskinner #kassiemorrell #debilitatingdisorder #children

The post WHAT HAPPENS WHEN YOUR CHILD HAS A RARE AND DEBILITATING DISORDER CALLED RETT SYNDROME. appeared first on Good News!.

THE MILLENNIAL GENERATION EMBRACES WELLNESS, BUT HOW DO THEY DEAL WITH SERIOUS CHRONIC DISEASES?

Austin Tang — Mon, 09 Dec 2019 20:12:25 +0000

http://goodnewsplanet.com/wp-content/uploads/2019/12/multiple_sclerosis_1.mp3
Many Millennial-aged People with Multiple Sclerosis Put Their Own Health Challenges on the Back Burner, Not Fully Understanding the Implications of Proactively Managing their Condition
It’s no secret that the millennial generation embraces wellness and has helped bring health-mindedness to the forefront of pop culture today. But when it comes to taking care of more serious health challenges, many experts are noticing people in their 20’s or 30’s are approaching healthcare differently and often prioritizing “living their best lives” over thinking about their health.
For younger people with serious health issues, putting off talking to a doctor or not getting on an effective therapy after the diagnosis of a chronic disease can have irreversible implications in the long-term. This is especially true with chronic conditions like multiple sclerosis (MS), the most common debilitating, progressive disease, which affects one million U.S. adults – striking in the “prime of life” when people are starting careers and families, and eventually leading to irreversible physical disability for many people. With the average age of onset at 34, most people newly diagnosed with MS over the next 10 to 15 years will be millennial-aged people (ages ~22-39).
According to the National MS Society many people newly diagnosed with MS react with shock and denial, often leading to them not taking proactive steps to manage their disease or connect with the broader MS community. It is important for millennial-aged people to be proactive in their care and pursue early treatment to slow disability progression as they are at an age and point in their disease when a disease-modifying therapy may offer greater impact.
Channing Barker, a millennial-aged person living with MS, who will shed light on her experience of living with MS and working with her doctor to take control of her health. Anne Gilbert, Director of Programs at Can Do MS, a national MS advocacy group known for their work with younger people living with MS, will also share her perspectives on the need to better connect with and support this younger generation of people living with MS.
When you book, we’ll provide you with guest bio & list of suggested questions. Interview courtesy: Genentech

The post THE MILLENNIAL GENERATION EMBRACES WELLNESS, BUT HOW DO THEY DEAL WITH SERIOUS CHRONIC DISEASES? appeared first on Good News!.

Celebrating Hope: One Patient’s Journey with a Rare, Debilitating Disease

Austin Tang — Wed, 20 Nov 2019 21:27:49 +0000

http://goodnewsplanet.com/wp-content/uploads/2019/11/kailey_mccallister_1.mp3
Until December 2016, there were no treatment options available for the nearly 9,000 individuals in the United States living with a rare disease called spinal muscular atrophy (SMA). Individuals with SMA often experienced symptoms related to the deteriorating effects of the condition, which may include the gradual onset of muscle weakness that can lead to the inability to stand or walk independently.
With scientific and treatment advances, patients of all ages have now been given hope. While commonly thought of as a pediatric disease, today 65% of individuals living with SMA are adults. One adult living with SMA is 28-year-old Kailey McCallister.
Despite being diagnosed with SMA at an early age, Kailey refused to allow the disease to keep her from having a positive outlook on her life and is eager to share her story. Kailey is joined by Dr. Margaret Frey, a neurologist specializing in SMA at Memorial Healthcare in Michigan, discusses the medical advances and initiatives that have helped the community fight back against this progressive disease
Interview is courtesy: Biogen

The post Celebrating Hope: One Patient’s Journey with a Rare, Debilitating Disease appeared first on Good News!.

Grammy Award-winning Recording Artist Dan Reynolds

Austin Tang — Wed, 20 Nov 2019 17:42:40 +0000

http://goodnewsplanet.com/wp-content/uploads/2019/11/dan_reynolds_1.mp3
Uses His Voice to Help Others Like Him Who Struggle With a Chronic and Potentially Debilitating Disease

Dan Reynolds, lead singer of the multi-platinum, Grammy Award-winning band, Imagine Dragons, has earned legions of fans worldwide with sold-out tours and a string of chart-topping songs including “Radioactive” and “Thunder.”

While the band dominates the charts, Dan has been living with ankylosing spondylitis (AS)—a painful disease that most people probably aren’t familiar with—for more than a decade. Dan was diagnosed with AS in his early 20s, and three of his brothers also have AS.

Dan continues his efforts to make a difference in the lives of others by supporting several causes, including his work as an advocate for the AS community. Recently, Reynolds has been working with Novartis Pharmaceuticals Corporation to launch Monster Pain in the AS, a national campaign to raise awareness of unexplained back pain that may be AS.

For Dan, unexplained back pain is personal. After years of living with intense and unexplained back pain, Dan finally found the right doctor, a rheumatologist, who helped him find answers and a treatment plan that worked for him. He says this was “the greatest feeling in the world.”

This is why Dan is speaking publicly about his AS, in hopes of encouraging others living with persistent, unexplained back pain to seek diagnosis and care. Some 2.7 million people in the United States are thought to have AS and related conditions.1 But because it’s underdiagnosed, the numbers may be even higher.

Reynolds talks about his journey, the challenges living with unexplained back pain that may be AS, and how to find help. Reynolds will be joined by rheumatologist [Dr. Hillary Norton, who also has AS,] to share the signs and symptoms, her unique perspective on the disease, and the importance of getting a correct diagnosis.

Interview is courtesy: Novartis Pharmaceuticals Corporation
1 Spondylitis Association of America website. Overview of Ankylosing Spondylitis. Available at https://www.spondylitis.org/Ankylosing-Spondylitis. Accessed September 27, 2019.

The post Grammy Award-winning Recording Artist Dan Reynolds appeared first on Good News!.

COPO Organization (a 501(c)(3) charitable organization) and Post Traumatic Stress Disorder (PTSD) awareness, click for videos n podcasts…

admin — Wed, 15 Nov 2017 18:41:25 +0000

http://goodnewsplanet.com/wp-content/uploads/2017/11/mo_1.mp3
http://goodnewsplanet.com/wp-content/uploads/2017/11/mo_gn.mp3
http://goodnewsplanet.com/wp-content/uploads/2017/11/mo_p.mp3
http://goodnewsplanet.com/wp-content/uploads/2017/11/ron_1.mp3
http://goodnewsplanet.com/wp-content/uploads/2017/11/ron_gn.mp3
http://goodnewsplanet.com/wp-content/uploads/2017/11/ron_p.mp3
The COPO Organization (a 501(c)(3) charitable organization) will be producing a dramatic short film to increase Post Traumatic Stress Disorder (PTSD) awareness.

It is requesting your participation in spreading the word to assist in raising the necessary funds through the Crowdrise platform.

Please join in this important effort to create a positive message for the hundreds of thousands and their families who suffer from this debilitating condition. You may participate by enlisting on the funding team and/or by making a tax deductible contribution.

Check out the link below and click on the “Join The Team” button. Your assistance as a team member will be reflected in the credits.

https://www.crowdrise.com/copos-ptsd-health-initiative

The post COPO Organization (a 501(c)(3) charitable organization) and Post Traumatic Stress Disorder (PTSD) awareness, click for videos n podcasts… appeared first on Good News!.