rare disease – Page 165 – Patient Worthy

Batten Disease Support & Research Association (BDSRA) 2017 Family Conference

Post author:Patient Worthy Contributor
Post published:July 6, 2017
Post category:

Register for the event here.

https://pixabay.com/en/child-cute-dad-father-love-man-1835730/

Flipping MPS III Loss into World Class Parenting

Post author:Sabina Kennedy
Post published:July 5, 2017
Post category:Mucopolysaccharidosis Rare Disease

Losing a child is a loss like no other—the most devastating experience a parent can face. And for one daddy who lost his little girl to mucopolysaccharidosis, a very rare genetic…

https://pixabay.com/en/mountain-lion-kitten-portrait-cat-1746823/

Lion Roaring to Find Hunter Syndrome Funding

Post author:Agena Boles
Post published:July 5, 2017
Post category:MPS II (Hunter Syndrome)

Everyone knows lions are the kings of the jungle/mountain/movie studio. They're brave and ferocious! "Lion" not only describes the personality of one fun little boy living with Hunter syndrome (MPS…

https://pixabay.com/en/cat-home-computers-maine-kun-house-2374290/

IPF Patients, Caregivers! Use This Free Online Educational Program!

Post author:Nia
Post published:July 5, 2017
Post category:Idiopathic Pulmonary Fibrosis IPF Rare Disease

“Idiopathic Pulmonary Fibrosis: Partnering with Your Doctor,” is an interactive program for people diagnosed with idiopathic pulmonary fibrosis (IPF) and their caregivers. And you know what's even more awesome about…

geralt / Pixabay

Tuberous Sclerosis Cost This Woman Part of Her Brain

Post author:Trudy Horsting
Post published:July 5, 2017
Post category:Rare Disease Tuberous Sclerosis Complex

Kelley Fox is 23 years old, but developmentally she’s only around 5 or 6 years old. She lost half of her brain due to a disorder called tuberous sclerosis. The…

https://pixabay.com/en/ask-sign-design-creative-2341784/

Got Sickle Cell Anemia? Don’t Be Afraid to Seek Help

Post author:Alexa Lee
Post published:July 5, 2017
Post category:Rare Disease Sickle cell anemia

I'll admit, I don't have sickle cell anemia, but I do have a bad habit: I don't ask for help. No matter the situation—maybe my car has been towed, or…

https://pixabay.com/en/woman-beautiful-model-people-2303383/

Why You Need That Sleep You’ve Been Putting Off

Post author:Al Pendleton
Post published:July 5, 2017
Post category:Narcolepsy Rare Disease

“Catching some Z’s.” “Crashing.” “Hitting the sack.” “Getting some shut eye.” “Zonking out.” “Getting forty winks.” We have a lot of idioms for sleep. On average, we spend one-third of our…

https://pixabay.com/en/anatomy-human-heart-pulse-frequency-2328534/

Von Willebrand Disease, the Lesser Known Cousin of Hemophilia—Learn Why

Post author:Erica Zahn
Post published:July 5, 2017
Post category:Rare Disease Von Willebrand's Disease

I first became aware of the bleeding disorder hemophilia when I was in high school reading about Nicholas II, the last Russian tsar. His son had severe hemophilia B, which…

https://pixabay.com/en/workout-girl-weights-fitness-1420741/

A Hypereosinophilic Syndrome Inspiration: Read This Woman’s Story

Post author:Trudy Horsting
Post published:July 4, 2017
Post category:Hypereosinophilic syndrome Rare Disease

Not only does Pamela Looney have hypereosinophilic syndrome (HES), she also has asthma and has suffered from a tumor. At only 15, the sudden development of this tumor severely affected…

https://pixabay.com/en/laboratory-scientists-research-385349/

How We Can Motivate Scientists to Research Rare Diseases

Post author:Trudy Horsting
Post published:July 4, 2017
Post category:Rare Disease

Rare disease research usually isn’t the first thing med students think to specialize in. Mostly, because it’s such a small field and it’s not extensively covered during medical school. Let's…

https://pixabay.com/en/film-movie-cinema-reel-retro-2233692/

A Life That Didn’t Go According to Plan: A Batten Disease (BD) Story

Post author:Trudy Horsting
Post published:July 4, 2017
Post category:Batten Disease Rare Disease

In June 2017, a film was released showcasing the story of a young girl named Kennedy Hansen who had Batten disease—a disease that causes a damaging buildup of lipofuscins in…

Chronic Lyme Disease and Dating as a Young Adult

Post author:Patient Worthy Contributor
Post published:July 4, 2017
Post category:Lyme Disease Rare Disease

As a kid, I always had a pretty good hold on life. Despite my father being deployed during my formative years, I played sports, made good grades, and had great…

https://pixabay.com/en/puzzle-play-mess-tricky-clean-up-750149/

Transverse Myelitis: A Tricky Disease With No Rhyme or Reason

Post author:Erica Zahn
Post published:July 4, 2017
Post category:Rare Disease Transverse myelitis

The spinal cord is a major part of the central nervous system, and when it becomes inflamed, transverse myelitis results. It often causes a band-like sensation across the trunk of…

https://pixabay.com/en/book-book-gift-heart-gift-read-1760998/

Books: An Often Overlooked Form of Rare Disease Support

Post author:Trudy Horsting
Post published:July 3, 2017
Post category:Rare Disease

Feeling alone in your struggles is almost an inevitable side effect of living with a rare disease. You’re unlikely to have a support group in a very close vicinity and…

https://pixabay.com/en/acne-pores-skin-pimple-female-1606765/

Have You Heard? Encouraging Results from TWO Phase 3 Severe Acne Clinical Trials

Post author:Trudy Horsting
Post published:July 3, 2017
Post category:Rare Disease Severe Acne

Allergan and Paratek Pharmaceuticals Inc. recently tested a drug called sarecycline for treatment of severe acne. The medicine is a tetracycline-derived antibiotic that is taken orally, and the best part…

$Super-Refractory Status Epilepticus: Could a Ketogenic Diet Help?$

https://pixabay.com/en/asparagus-green-green-asparagus-1307604/

Super-Refractory Status Epilepticus: Could a Ketogenic Diet Help?

Post author:Nia
Post published:July 3, 2017
Post category:Rare Disease Status epilepticus

Status epilepticus is a rare and sometimes fatal condition. About 60 percent of those with this super-refractory status epilepticus (SRSE) die, making it the most dangerous type of seizure. This…

The Key to Treating Rare Kidney Disease is… Snake Venom?

Post author:Jean Martell
Post published:July 3, 2017
Post category:Polycystic Kidney Disease Rare Disease

Long have these cold-blooded, no-limbed reptiles bore a bad reputation; from the Bible to Disney to Indiana Jones. But are things about to change? According to a new French study…

https://pixabay.com/en/technology-robot-human-hand-2025795/

World of Robotics Sees First Steps Toward Spinal Muscular Atrophy Exoskeleton

Post author:Al Pendleton
Post published:July 3, 2017
Post category:Rare Disease Spinal Muscular Atrophy

When Ellen Ripley used the Caterpillar P-5000 Work Loader to pick up the xenomorph queen in the 1986 science-fiction masterpiece Aliens, who would've known the suit was inspiring the next…

Organ Donation Could Change The Life of This Child with PH1

Post author:Trudy Horsting
Post published:July 3, 2017
Post category:Primary Hyperoxaluria Type 1 Rare Disease

According to QC Online, at six months old, Lorelei Lovelady was diagnosed with primary hyperoxaluria type 1 (PH1). Now, almost 9 months, the disease has caused her to need a new liver…

Editor’s Choice: Orkambi Shouldn’t be a Pie in the Sky for UK Patients

Post author:Patient Worthy Contributor
Post published:June 30, 2017
Post category:Cystic Fibrosis Gastroparesis Guttate Psoriasis Rare Disease

Happy Independence Day Weekend Everyone! We have the latest update on the UK cystic fibrosis fight for Orkambi. We also have a great contribution on the importance of taking care…

Source: https://pixabay.com/en/window-broke-glass-wall-dirty-1861888/

Fighting Guttate Psoriasis From the Inside, Out

Post author:Sarah Lau
Post published:June 30, 2017
Post category:Guttate Psoriasis Rare Disease

At the peak of my guttate psoriasis flare up, I had plaques covering my entire body. And when I say entire, I mean entire. My scalp was constantly littered with…

Source: https://pixabay.com/en/band-aid-first-aids-injury-24298/

Better Than a Bandaid: Hemophilia A Treatment is a Success!

Post author:Athena Lee
Post published:June 30, 2017
Post category:Hemophilia Hemophilia A Rare Disease

Bleeding is painful. It's not only painful, but probably worse, it's also just a nuisance and a hassle. Lucky for most of us, pressure, a bandaid, or, at worst, a…

https://pixabay.com/en/cells-human-medical-biology-health-1872666/

Did Scientists Just Crack the Code for a ‘Social Network’ of the Cell?

Post author:Jean Martell
Post published:June 30, 2017
Post category:Rare Disease

According to the Salk Institute for Biological Studies, scientists have had a breakthrough in past efforts to develop a technique that can determine which proteins in a cell interact with…

https://pixabay.com/en/dark-fireworks-hands-lights-macro-1845065/

Two Potential Treatments for Psoriatic Arthritis You Need to Watch

Post author:Trudy Horsting
Post published:June 30, 2017
Post category:Psoriatic Arthritis Rare Disease

The Annual European Congress of Rheumatology (EULAR) press conference showcased two very promising treatment options for psoriatic arthritis (PsA). Both treatments show promise in limiting the inflammation associated with the…

Complicated Feelings with Waldenstrom Macroglobulinemia

Post author:Trudy Horsting
Post published:June 30, 2017
Post category:Rare Disease Waldenstrom Macroglobulinemia

Jessie Parks is a writer for the Charleston City Paper. Her words are absolutely beautiful to behold. The reason she started her column? Her mother. who was diagnosed with Waldenstrom macroglobulinemia…

Batten Disease Support & Research Association (BDSRA) 2017 Family Conference

Flipping MPS III Loss into World Class Parenting

Lion Roaring to Find Hunter Syndrome Funding

IPF Patients, Caregivers! Use This Free Online Educational Program!

Tuberous Sclerosis Cost This Woman Part of Her Brain

Got Sickle Cell Anemia? Don’t Be Afraid to Seek Help

Why You Need That Sleep You’ve Been Putting Off

Von Willebrand Disease, the Lesser Known Cousin of Hemophilia—Learn Why

A Hypereosinophilic Syndrome Inspiration: Read This Woman’s Story

How We Can Motivate Scientists to Research Rare Diseases

A Life That Didn’t Go According to Plan: A Batten Disease (BD) Story

Chronic Lyme Disease and Dating as a Young Adult

Transverse Myelitis: A Tricky Disease With No Rhyme or Reason

Books: An Often Overlooked Form of Rare Disease Support

Have You Heard? Encouraging Results from TWO Phase 3 Severe Acne Clinical Trials

Super-Refractory Status Epilepticus: Could a Ketogenic Diet Help?

The Key to Treating Rare Kidney Disease is… Snake Venom?

World of Robotics Sees First Steps Toward Spinal Muscular Atrophy Exoskeleton

Organ Donation Could Change The Life of This Child with PH1

Editor’s Choice: Orkambi Shouldn’t be a Pie in the Sky for UK Patients

Fighting Guttate Psoriasis From the Inside, Out

Better Than a Bandaid: Hemophilia A Treatment is a Success!

Did Scientists Just Crack the Code for a ‘Social Network’ of the Cell?

Two Potential Treatments for Psoriatic Arthritis You Need to Watch

Complicated Feelings with Waldenstrom Macroglobulinemia

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