Rare types of MS

Selma Blair, the TV and film actor who is also a multiple sclerosis (MS) advocate, will headline next month’s second International Virtual Summit for young adults with chronic and rare disorders. Hosted by Health Advocacy Summit (HAS), the Aug. 7-8 event will focus on empowerment, resources, and connection. The event is…

Has anyone ever told you to be thankful that things aren’t worse after you’ve received upsetting news? Have you ever felt pressured by others to be grateful, even in the most difficult circumstances? It’s happened to me more times than I can remember. I now understand…

Trigeminal neuralgia is a term used for facial pain associated with damage to the trigeminal nerve, or the 5th cranial nerve — the largest one among the body’s 12 pairs of cranial nerves and one of the most widely distributed nerves in the head. Usually occurring in people older…

Photo courtesy of Lelainia Lloyd Day 5 of 31 Lelainia Lloyd is a patient advocate in Canada. These are her words: March is Neuromyelitis Optica (NMO) awareness month. NMO is a rare disease that is often mistaken for MS. Many NMO patients are…

Rare – adjective Not occurring very often; uncommon Unusually good or remarkable On Feb. 28, the world will celebrate international Rare Disease Day. A rare disease is one that affects fewer than 200,000 people in the U.S. Almost 7,000 rare or orphan diseases meet the criteria to be considered…

FFF Enterprises and Bionews Services, publisher of this website, announced today that both rare and orphan disease advocates are joining forces to provide patients with resources to help them connect as a community and continue to manage their health during this time when many are finding themselves alone.

In recognition of Rare Disease Day Feb. 29, Bionews Services launched a social media campaign last month asking patients to describe what makes them rare. Running Feb. 7–29, the #WhatMakesMeRare campaign was aimed at uplifting people with rare diseases by encouraging them to share their stories and perspectives. The…

Feb. 29 is Rare Disease Day. It’s a day on which those in the rare disease community attempt to raise awareness about their diseases. I don’t think MS should be included. With about 2.5 million people worldwide in the MS community, I don’t consider it to be rare.

I have secondary progressive multiple sclerosis and I am rare. In honor of Rare Disease Day on Feb. 29, I honor myself. I honor you and anyone else with a rare disease. I have been asked if multiple sclerosis qualifies as a rare disease. It does if…

Being diagnosed with a chronic illness isn’t easy by any stretch of the imagination. It comes with a new medical language to learn, a plethora of lengthy appointments, an impressive amount of blood tests, and a lot of frustration. But does it lead…

Editor’s note: “Need to Know” is a series inspired by common forum questions and comments from readers. Have a comment or question about MS? Please visit our forum. I love it that Feb. 29 is Rare Disease Day in 2020. Leap day itself is a rarity, a gift…

Researchers have identified a new subtype of multiple sclerosis (MS), one marked by nerve cell degeneration that occurs independently of immune system attacks against myelin, a process known as demyelination and considered a hallmark of MS. The new subtype — called myelocortical MS — is indistinguishable from others in the…

Canada’s healthcare system is excellent for people with common ailments like diabetes or high blood pressure, but it’s “basically failing the nearly three million Canadians with rare diseases.” So says Durhane Wong-Rieger, president and CEO of the Canadian Organization for Rare Disorders (CORD), a Toronto-based network representing 102 patient advocacy…

Trigeminal neuralgia is a term used for facial pain which begins in the trigeminal nerve. It usually occurs in people over the age of 50 and affects women more than men. However, it is more common in people who have multiple sclerosis (MS). We’ve put together a list of facts about…

Multiple sclerosis, as with other neurological disorders, brings a lot of changes to our bodies. Many changes and symptoms are much more common than others. It is the lesser-known conditions that MS evokes that sparked my interest for this column. Pseudobulbar Affect (PBA): is a rare condition reported to…

This is my Pick of the Week’s News, as published by Multiple Sclerosis News Today. Study of Myelin-producing Cells a Step Forward for MS, Other Neurological Disorders Isn’t it strange how often in the world of science, something of importance is found in an unconnected study? Here,…

The National Multiple Sclerosis Society recently announced that a research team is recruiting 132 patients with a diagnosis of neuromyelitis optica spectrum disorders (NMOSD) for a Phase 3 clinical study comparing an experimental medicine with an inactive placebo. NMOSD is a rare disorder caused by immune system cells attacking…

The Patient-Centered Outcomes Research Institute (PCORI) Board of Governors recently approved an $83 million grant to support 26 patient-centered, comparative effectiveness clinical research (CER) studies on a range of diseases and patient groups. Two of these grants, totaling $29.5 million, will fund research into the care of patients infected with hepatitis…

The Food and Drug Administration granted Orphan Drug Designation to Inhibikase Therapeutics’, Inc. lead product, IkT-001Pro (imatinib), to treat progressive multifocal leukoencephalopathy (PML). According to the National Institute of Neurological Disorders and Stroke, PML affects the white matter of the brain usually through a virus known as Polyomavirus JC (JC…