The Emotional Impact of Living with Psoriatic Arthritis
Living with a chronic illness like psoriatic arthritis entails the constant presence of emotions such as frustration and loneliness. These emotions can be triggered by various factors, including the...
View ArticleWhat could it be like living with Myasthenia Gravis?
Imagine getting up in the morning… …You hit the shower. But while washing your hair, you have to put down your arms every few seconds and rest. The same goes when washing your body. Soap, lather,...
View ArticleButterfly Skin Unmasked: The Challenge of Living with Epidermolysis Bullosa
Recognized as both “butterfly skin” and “the worst disease you’ve never heard of,” epidermolysis bullosa (EB) casts a profound impact on the lives of those affected by its relentless assault on the...
View ArticleThe Ripple Effect: How ADEM Impacts Patients and their Loved Ones
Acute Disseminated Encephalomyelitis (ADEM) is a rare disorder marked by severe swelling in the brain and spinal cord. It usually occurs after a bacterial or viral infection, commonly affecting the...
View ArticleThe Family’s Burden: Shedding Light on the Challenges of hATTR Amyloidosis
Hereditary Transthyretin (hATTR) Amyloidosis is an inherited condition caused by mutations in the transthyretin gene, leading to the accumulation of abnormal amyloid proteins in various organs. It is...
View ArticleComplex Regional Pain Syndrome: A Burdensome Journey of Relentless Pain
For some people, taking a shower, feeling the wind on their skin, or their clothes brushing their legs can bring excruciating pain. It’s as though they bear an exposed wound, where even the simplest...
View ArticleKnow your family history: Unmasking Von Willebrand Disease’s Pervasive Impact
Executive Summary Von Willebrand Disease (VWD) is a lifelong bleeding disorder that poses both physical and social challenges. For instance, minor injuries can result in significant blood loss, and...
View ArticleYour Guide to Understanding the Progressive Impact of Spinocerebellar Ataxia...
Spinocerebellar Ataxia (SCA) is an inherited disorder that primarily affects the cerebellum, the part of the brain responsible for coordination and balance. It is characterized by progressive...
View ArticleBest Ways To Interact with Hypermobile Ehlers-Danlos Syndrome Patients
Hypermobile Ehlers-Danlos syndrome (hEDS) is a rare disorder caused by genetic mutations affecting collagen, a crucial connective tissue protein. It is one of the 6 major and 13 subtypes of EDS. Its...
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Helpful Information about Primary Sclerosing Cholangitis
Primary Sclerosing Cholangitis (PSC) is a rare and chronic disease that is characterized by inflammation and scarring within the bile ducts, causing them to narrow and, eventually, become completely...
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