patient stories – Page 13

Rare Community Profiles: “A Ballsy Sense of Tumor:” How Justin’s Testicular Cancer Diagnosis Led Him to Advocacy Around Men’s Health

Post author:Jessica Lynn
Post published:December 13, 2023
Post category:Testicular Cancer

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

GoFundMe Launched to Support Saskatchewan Boy with Sanfilippo Syndrome

Post author:Jessica Lynn
Post published:December 11, 2023
Post category:Sanfilippo Syndrome

Four-year-old Emmett Doucette is currently fascinated by firemen, dinosaurs (he has a favorite T-rex toy!), and toy race cars. He’s known to wear a fun fireman outfit and he loves…

source: pixabay.com

Her Ear Infection Turned Out to Be an Acoustic Neuroma

Post author:Jessica Lynn
Post published:December 11, 2023
Post category:Acoustic neuroma

For months, 47-year-old Jane Lightfoot struggled with what she thought was a nasty ear infection. The spot behind her right ear ached; she was dizzy, couldn’t hear well, and the…

source: shutterstock.com

Family Needs Urgent Support to Treat Son’s Wilson’s Disease

Post author:James Moore
Post published:December 8, 2023
Post category:Wilson Disease Wilson's Disease

According to a story from The Print, Neha Shoriwala, a mother from New Delhi, is urgently seeking help for her son Harshil, who lives with Wilson's disease, a rare illness…

source: pixabay.com

Comedian and Actress Trained for Charity Walk after Deep Cartilage Knee Damage

Post author:Rose Duesterwald
Post published:December 7, 2023
Post category:Deep cartilage knee damage

Josie Lawrence, a 42-year-old comedian and actress residing in East London, UK, has adopted an unconventional training routine for her even more extraordinary walk along the Great Chinese Wall,…

source: shutterstock.com

Living with Li-Fraumeni Syndrome: A Rare Patient Story

Post author:James Moore
Post published:December 5, 2023
Post category:Li-Fraumeni syndrome

James Higgins' father was diagnosed with brain cancer in 1965. At that time, there was basically no treatment for brain cancer, and about a year after the diagnosis, he was…

Source: www.pixabay.com

Woman Contracts Acanthamoeba Keratitis (AK) From Swimming Pool

Post author:Jessica Lynn
Post published:November 29, 2023
Post category:Acanthamoeba infection

When 38-year-old Shereen-Fay Griffin went to the local swimming pool, she was hoping for some fun and relaxation. Instead, she contracted a rare but serious infection that left her blind…

https://pixabay.com/en/american-football-football-sports-1666276/

NFL Player Foster Moreau is in Full Remission from Hodgkin’s Lymphoma

Post author:Jessica Lynn
Post published:November 29, 2023
Post category:Hodgkin Lymphoma Timely

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

source: shutterstock.com

Living with Pulmonary Fibrosis: Adam’s Rare Patient Story (and World Record Attempt!)

Post author:Patient Worthy Contributor
Post published:November 29, 2023
Post category:Idiopathic Pulmonary Fibrosis Pulmonary fibrosis

Written by Adam Faatz Imagine not being able to breathe and spending nine days climbing the world's tallest freestanding mountain. That is my story, and that is my goal. Sixty-five…

A Mother Raises NF1 Awareness After Son’s Diagnosis

Post author:Jessica Lynn
Post published:November 28, 2023
Post category:Neurofibromatosis Neurofibromatosis Type 1

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

source: pixabay.com

Family Asks People to Join Bone Marrow Registry After Daughter’s Aplastic Anemia Diagnosis

Post author:Jessica Lynn
Post published:November 23, 2023
Post category:Aplastic anemia

Give the gift of life this holiday season and consider donating your bone marrow to BeTheMatch. Each year, over 18,000 people are diagnosed with a life-threatening blood condition that could…

Source: Pixabay

NHS Won’t Cover Prosthetic Foot for Girl Who Had Amniotic Band Syndrome

Post author:Jessica Lynn
Post published:November 21, 2023
Post category:Amniotic Band Syndrome

When Kara Roberts learned that she was pregnant with a daughter, she was thrilled. While her pregnancy itself was relatively normal, Roberts learned that her daughter, Scarlett, would need one…

1 in 10 Million: 20-Year-Old Diagnosed with Stage IV Neuroblastoma

Post author:Jessica Lynn
Post published:November 21, 2023
Post category:Neuroblastoma

Ask any doctor about neuroblastoma and they'll tell you: this rare cancer, which forms from immature nerve cells, predominantly affects children who are five years old or younger. So when…

Photo courtesy of Tony L.

Rare Community Profiles: Battling Renal Cell Carcinoma and Oligodendroglioma Led Tony to Found a Nonprofit for Families Fighting Cancer

Post author:Jessica Lynn
Post published:November 21, 2023
Post category:Oligodendroglioma Renal Cell Carcinoma

Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families, advocates, scientists, and more.…

source: pixabay.com

Actor Tyler James Williams Shares his Experience with Crohn’s Disease

Post author:James Moore
Post published:November 14, 2023
Post category:Crohn's disease

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

source: Nadia Bilous

Rare Community Profiles: The Importance of Community While Raising a Child with GRIN2B Disorder

Post author:Patient Worthy Contributor
Post published:November 14, 2023
Post category:GRIN disorder

Rare Community Profiles Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…

source: shutterstock.com

Fibular Hemimelia: Angelo’s Rare Patient Story

Post author:James Moore
Post published:November 13, 2023
Post category:Fibular Hemimelia

Jenna Cohen was 20 weeks pregnant when a scan revealed a significant developmental abnormality in her future child: the absence of the fibula. The fibula, or calf bone, is found…

Photo courtesy of Elijah Stacey

Rare Community Profiles: Destroy Duchenne: How Elijah Stacy is Working to Improve the Lives of People with Duchenne Muscular Dystrophy

Post author:Jessica Lynn
Post published:November 9, 2023
Post category:Duchenne Muscular Dystrophy

Rare Community Profiles Rare Community Profiles is a Patient Worthy article series of long-form interviews featuring various stakeholders in the rare disease community, such as patients, their families,…

Photo by Kristine Wook on Unsplash

Family Opens GoFundMe for 5th Grader with CVID

Post author:Jessica Lynn
Post published:November 8, 2023
Post category:Common Variable Immune Deficiency

When Tucker Krause was a young boy, his family noticed that he frequently got sick. More than frequently, even. In fact, when his mom really thinks about it, Tucker was…

source: shutterstock.com

A Michigan Mother is Raising KBG Syndrome Awareness After Son’s Diagnosis

Post author:Jessica Lynn
Post published:November 2, 2023
Post category:KBG syndrome

Receiving a rare disease diagnosis can be challenging. It can be even more challenging when there isn’t a lot of information to lean back on. While there has been…

Pexels / Pixabay

Patient Advocate with LEMS Writes Rap Anthem for Rare Disease Community

Post author:Jessica Lynn
Post published:October 30, 2023
Post category:Lambert-Eaton Myasthenic Syndrome

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

Source: Pixabay.com

Together They’ve Tackled Life, Love, and Huntington’s Disease

Post author:Jessica Lynn
Post published:October 27, 2023
Post category:Huntington's Disease

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

12019 / Pixabay

Baby Undergoes Surgery for Spina Bifida in the Womb

Post author:Jessica Lynn
Post published:October 26, 2023
Post category:Spina Bifida

When Valentina Rodriguez and Jason Gutierrez learned that their child would be born with spina bifida, they jumped into action. Neither knew exactly how to help their daughter, not yet—but…

jarmoluk / Pixabay

Why This Kentucky Family Raises Hurler Syndrome Awareness

Post author:Jessica Lynn
Post published:October 20, 2023
Post category:Hurler Syndrome MPS I MPS I (Hurler Syndrome)

Newborn screening is an important public health initiative that checks for rare and serious genetic, blood, hormonal, or metabolic conditions at birth. The test collects blood through a heel…

https://pixabay.com/en/good-night-sleep-fall-asleep-1505195/

A Mental Health Counselor Discusses His Life with Narcolepsy

Post author:Jessica Lynn
Post published:October 19, 2023
Post category:Narcolepsy

Editor's Note: We believe that patients are a key part of developing and leading the conversation in disease communities. Patient Worthy sometimes partners with reputable agencies that wish to speak…

Rare Community Profiles: “A Ballsy Sense of Tumor:” How Justin’s Testicular Cancer Diagnosis Led Him to Advocacy Around Men’s Health

GoFundMe Launched to Support Saskatchewan Boy with Sanfilippo Syndrome

Her Ear Infection Turned Out to Be an Acoustic Neuroma

Family Needs Urgent Support to Treat Son’s Wilson’s Disease

Comedian and Actress Trained for Charity Walk after Deep Cartilage Knee Damage

Living with Li-Fraumeni Syndrome: A Rare Patient Story

Woman Contracts Acanthamoeba Keratitis (AK) From Swimming Pool

NFL Player Foster Moreau is in Full Remission from Hodgkin’s Lymphoma

Living with Pulmonary Fibrosis: Adam’s Rare Patient Story (and World Record Attempt!)

A Mother Raises NF1 Awareness After Son’s Diagnosis

Family Asks People to Join Bone Marrow Registry After Daughter’s Aplastic Anemia Diagnosis

NHS Won’t Cover Prosthetic Foot for Girl Who Had Amniotic Band Syndrome

1 in 10 Million: 20-Year-Old Diagnosed with Stage IV Neuroblastoma

Rare Community Profiles: Battling Renal Cell Carcinoma and Oligodendroglioma Led Tony to Found a Nonprofit for Families Fighting Cancer

Actor Tyler James Williams Shares his Experience with Crohn’s Disease

Rare Community Profiles: The Importance of Community While Raising a Child with GRIN2B Disorder

Fibular Hemimelia: Angelo’s Rare Patient Story

Rare Community Profiles: Destroy Duchenne: How Elijah Stacy is Working to Improve the Lives of People with Duchenne Muscular Dystrophy

Family Opens GoFundMe for 5th Grader with CVID

A Michigan Mother is Raising KBG Syndrome Awareness After Son’s Diagnosis

Patient Advocate with LEMS Writes Rap Anthem for Rare Disease Community

Together They’ve Tackled Life, Love, and Huntington’s Disease

Baby Undergoes Surgery for Spina Bifida in the Womb

Why This Kentucky Family Raises Hurler Syndrome Awareness

A Mental Health Counselor Discusses His Life with Narcolepsy

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