Last year, then sixteen-year-old Joshua Martineau who has Kabuki syndrome and Tourette syndrome, had a challenging experience at his local Cineplex. According to ChCh, Joshua was excited to celebrate his birthday. He…
In general, sarcoidosis can affect various organs in the body including the lungs. Sarcoidosis causes granulomas, which are tiny masses of tissue clusters, to form. This leads to malfunctioning or…
According to the Times Recorder, Estelle is living with Tourette syndrome, which is a disorder of the nervous system. Those who suffer from the disorder exhibit uncontrolled, unwanted sounds or…
Diamond Blackfan anemia (DBA) occurs when the bone marrow in one’s body either does not produce red blood cells or doesn't create enough of them. Sometimes called Blackfan Diamond anemia,…
One night in March 2016,13-year-old Treyvon Summers experienced extreme pain that woke him up out his sleep. This was the start of him losing his mobility in both his legs.…
Sickle cell disease, hemophilia, and thalassemia are a few of the inherited blood disorders. Dr. Waveney Charles is a hematologist, or specialist in blood-related conditions. She believes that the number…
What should you know about Tourette syndrome? How can you explain it to your child? These are probably just a few questions you may have if your child has been…
Trigeminal neuralgia (TN), or extreme, sudden facial pain associated with the 5th cranial nerve, occurs frequently in patients who have received a multiple sclerosis (MS) diagnosis. In a survey with 8,590 respondents,…
According to Dr. Steven Carson, of all the autoimmune disorders that are both chronic and joint-related, Sjogren's syndrome remains the hardest to manage. Standards of care designed to guide doctors…
Those who have received the diagnosis of trigeminal neuralgia can experience sudden pain in the jaw, cheeks, and forehead. This pain can last seconds to a few minutes. Some people with…
According to the Rare Disease Report, 50 years ago, when Tommy Hoag was six years old, he received a kidney transplant. Tommy needed this transplant after having Scarlet fever and…
Karl Swaine is nine years old. He has a rare progressive and genetic disorder called Hunter syndrome. This disorder prevents the body from breaking sugar molecules down. Throughout the world,…
According to the Daily Mail, 18-year-old Lewis Nickell from Northern Ireland has Tourette syndrome. The condition is characterized by a mixture of voluntary noises and movements referred to as tics.…
Each year on the very last day of February, Jeff Leider makes a detour on his Hunter syndrome (mucopolysaccharide II) journey to travel from his home state of New Jersey to Washington…
Scotland’s Aaron Hunter went on Twitter to challenge the one and only Iron Man. He asked him for help with raising funds and awareness for rapid-onset obesity (RO) with hypothalamic dysregulation…
Abigail, a fifth grade student, originally took a trip to the Capitol to advocate for more research on tuberous sclerosis complex (TSC). The trip had unexpected results. As the Daily…
Over ten years ago, four close friends founded a charity called Angie’s Hope. One of the founders, Angie Lee, has been living with spinal muscular atrophy (SMA) since she was…
According to Seacoast Online early this year, Cohl Capparelli was diagnosed with spinal muscular atrophy (SMA) about two years ago. SMA is one of the diseases that the Muscular Dystrophy Association…
Kumail was diagnosed with spinal muscular atrophy (SMA) and started Spinraza in an international trial. As The Herald Sun reports, he began the treatment at six weeks old before he…
According to SBS Australia, Duncan Whitcombe and his son Bailey are both living with a rare neurological condition: Tourette syndrome. Duncan has had Tourette's since he was 10. At that…
Some good news for patients with Spinal Muscular Atrophy (SMA) and their families! There's a new booklet out with detailed information on how to navigate the increasingly complex health insurance…
“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…
Kids with spinal muscular atrophy (SMA) have a hard time with an evaluation method known as "pair-matching tests." They have a harder time identifying what number, letter, color, or object…
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…
Annually, 13 out of 100,000 people are diagnosed with trigeminal neuralgia. Trigeminal neuralgia is described as a sharp and intense pain that can occur in the face or mouth. The…
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