rare disease

Living Today Well
As a lifelong “spoonie” I have faced the blank stare of doctors who can’t or have no idea how to help, the glare of unbelieving bosses (and “friends”) and pity in the eyes of those who truly love and care for me. I have experienced both good and bad times, like most of you.

I have fought to recover from nine major intestinal surgeries, ongoing intestinal inflammation, chronic debilitating nausea, Hashimoto’s Thyroiditis, abnormal kidney and liver function, abnormal endocrine function, cancerous fibroid tumors resulting in multiple surgeries finally necessitating a full hysterectomy… and now my new favorite – abdominal cutaneous nerve entrapment syndrome – or ACNES.

I have spent my life adapting my behaviors and activities to achieve a level of normality. And I have been quite successful at times. Other times – not so much. I have learned to be very good at hiding my symptoms and medical issues by slapping on a happy face, and some great make-up! I am sure you have too.

So I decided to start this blog to create a resource to make those days a bit more bearable. A place where I strive to find the nugget of goodness in this sea of negativity; the crumb of information or encouragement that may just help one of my fellow “spoonies.” My goal is to share the lessons I have learned and the methods that help me. Hopefully I will help you, make the most you can out of every day.
Memoirs of a Strong Woman; A Frightening Look Inside the US Healthcare System
A trip to the local Emergency room culminates in profiling, medical neglect, and then gaslighting, and ultimately physical abuse by a sadistic on-call neurologist and then his female resident. Little does the patient know this is just the beginning of a horror story that never seems to end.
Miss•Treated
Miss•Treated is devoted to fighting misogyny or sexism in the medical profession one story at a time.
Miss•Treated
Moving Naturally with Hypermobility
Education for patients and healthcare providers on proper physical therapy techniques, natural movement, and restorative exercise for Hypermobility Syndromes, such as Ehlers-Danlos syndrome (EDS), including the complexities often caused by overlapping conditions.

Living with chronic pain is one of the hardest things that many of us have to endure on a daily basis. Living with pain while also coping with the multi-systemic effects of joint hypermobility, commonly diagnosed as Ehlers-Danlos syndrome (EDS), is even more challenging. One of the best treatments for chronic pain due to Hypermobility Syndromes/EDS is learning how to move and exercise properly — our muscles do what our connective tissues cannot.

Move More. Move Better.
My Invisible Illness Life
Living a life full of love, hope, happiness and faith in the face of chronic illness
My kidney Failure Journey
I was born with Chronic renal failure (kidney failure) I am currently on dialysis since 2015 and I blog about how it affects my every day life.
My Medical Musings
My musings of living a medically retired life with a rare genetic bone disease, permanent colostomy & Rheumatoid Arthritis
My Normal
storytelling for rare disease health
Navigating the Storms
encouragement and education for and about invisible disabilities
Not So Average Mama
Not So Average Mama blog is a blog about life in general. I write about many topics including Chronic illness and alternative ways of treating. We are also an unschooling family. I work as a professional photographer and spend my spare time with my kids at roller derby as well as fostering puppies.
Not Standing Still’s Disease
Proof that you can conquer anything – even chronic illness – with a sarcastic attitude, a smile, and a backwards baseball cap
Primary Immune Patients United
Empowering patients to make informed and proactive health care decisions. In contrast, to current profit-and-politics that are derived from patient illness. Identifying fact from fiction by exposure to a variety of relevant evidence, research, legislation, and current concerns. Topics include comprehensive matters in health care, quality of life, unique experiences and challenges of patients, and families, with rare disease and invisible illnesses.
Rare Bear Ramblings
A little blog revealing the raw realities of living with chronic illness, rare disease, and mental illness. I share tips and tricks to dealing with the trials of illness, and I hope to encourage others through my writing
Shona Louise
Shona Louise is a UK blog that covers beauty, lifestyle and disability topics including discussing what life is like living with a rare connective tissue disorder, Marfan Syndrome.
Snowflakes and Spoons
Myasthenia Gravis Warrior. Autoimmune health and wellness blog.
Struggling to Thrive
A parent’s journey raising a Failure to Thrive child.
Tales of a Medical Oddity–Tumor Blues Blog
A sometime diary where I share the foibles of dealing with chronic illness.
The Medical Dorm
We are two college roommates (and a service dog) with various medical conditions writing about living with chronic illness and surviving college.
The Online Life Of Laura
My blog was created to give me a space to talk about my chronic illness and general feelings and to feel like I am a part of the outside world but over time, more pages have been added to it as I have realised that I am not my illnesses and that there is so much more to me including the things I enjoy and do well such as baking, making and having fun with friends and family.
The Sick and the Dating
Rare CSF disease, allergies, mast cell activation syndrome, asthma, IBS, Hashimoto’s, alopecia universalis, fibromyalgia, Lyme’s disease, dating
The Sick Housewife
A record of Lena’s health and daily life as a chronically ill housewife!