Addison's Disease ...Most people have never heard of Addison's Disease or know what adrenal glands are and what they do. I have a little information about it, but not much. I was...Reactions0reactionsComments2 replies
CIDP (Chronic Inflammatory Demyelinating Polyneuritis)...I was an RN but didn't know about this disease. I would love to hear from people who have it, what kind of treatment they get, a little pathophysiology, and...Reactions0reactionsComments0 replies
Finding My Calling...I have always known I was meant to help others. It feels like an intense need to share my light and bring calm or happiness. But I can't hold someone...Reactions0reactionsComments2 comments
Living Life With Rare Diseases: Giving Up vs Not Giving Up...As I continue forward in my healthcare journey as a person with multiple rare diseases, I have begun to accept that I need to streamline my life, meaning I now...Reactions0reactionsComments5 comments
Living With X-linked Hypophosphatemia...X-linked hypophosphatemia (XLH) is a rare genetic condition that lasts a person’s entire life. It is caused by a mutation in the PHEX gene that prevents the body from using...Reactions0reactionsComments0 comments
How Is X-linked Hypophosphatemia Diagnosed?...X-linked hypophosphatemia (XLH) is a chronic, progressive disease, so early diagnosis is important to stop symptoms from getting worse. XLH is diagnosed using a combination of blood, urine, and imaging...Reactions0reactionsComments0 comments
Misconceptions About My Rare Disease...It's hard to know exactly what someone else is going through, especially if the other person has a rare disease that most people have never heard of. I think it's...Reactions0reactionsComments0 comments
Disability Pride Month With a Rare Disease...Disability Pride Month is celebrated in July to commemorate the signing of the Americans with Disabilities Act (ADA) in 1990. As someone with a congenital rare disorder that causes physical...Reactions0reactionsComments1 comments
How I Start Difficult Conversations About My Rare Disease...When living with a rare disease, setting boundaries around physical limitations is important. As a person with narcolepsy, I've had to learn how to say "no" to people. This isn't...Reactions0reactionsComments11 comments
SMS...Does anyone on here have Smith-Magenis syndrome or have family members with it?...Reactions0reactionsComments0 repliesDiagnosisCopingTips & Advice
What to Know About Newborn Screening and Rare Diseases...Newborn screening (NBS) is a program in the United States that tests all babies for certain treatable medical conditions. Early detection and treatment with NBS is critical for children with...Reactions0reactionsComments0 comments
How Is X-linked Hypophosphatemia Treated?...X-linked hypophosphatemia (XLH) is a life-long condition in which the body does not process the nutrient phosphorus properly. Because phosphorus is necessary for a host of important functions, a wide...Reactions0reactionsComments0 comments
When We Medically Gaslight Ourselves...We're used to others medically gaslighting us – but what about when we do it to ourselves? In a previous article, I shared my eagerness for medical testing to identify...Reactions0reactionsComments0 comments
Multiple chemical sensitivity...I am bothered by smells noises cold and smoke...Reactions0reactionsComments1 repliesCoping
Facing a Terminal Illness...Being diagnosed with an incurable rare disease can be an incredibly difficult experience. It may affect you physically, emotionally, and spiritually. It is important to learn how to deal with...Reactions0reactionsComments0 comments
Questions to Ask Your Doctor When You Have X-linked Hypophosphatemia...Receiving a diagnosis of X-linked hypophosphatemia (XLH) can be challenging and overwhelming at first. Whether you are diagnosed as a baby, a child, or an adult, understanding your condition and...Reactions0reactionsComments0 comments
Gina Miller...Gina is an advocate for late-diagnosed cystic fibrosis (CF) patients, and CF related-disorders, plus various other disorders she has been navigating along her healthcare journey. As a senior with multiple...
5 Ways I Reduce Stress With a Rare Disease...Living with a rare disease can be stressful in itself. There's the history of medical trauma, for example, from being put through the trash compactor that the U.S. calls a...Reactions0reactionsComments0 comments
X-linked Hypophosphatemia and Genetics...X-linked hypophosphatemia (XLH) is a genetic condition. People with XLH have changes in a specific gene that affect how their body uses the mineral phosphorus (phosphate). These gene changes are...Reactions0reactionsComments0 comments
Community Views: The Most Annoying Unsolicited Advice...If you have ever expressed your feelings or concerns to a loved one about your rare disease, they may have responded with advice – and it is not always helpful...Reactions0reactionsComments1 comments