June 30th is World Pneumothorax Day and this year we are urging all doctors to ask about family history if a patient presents with a spontaneous pneumothorax. This one…
Eight years: that’s how long it has been since Moxie Garrison was diagnosed with Marfan syndrome. Now nine years old, the spunky and resilient third grader approaches every challenge head-on.…
Have you ever heard of Marfan syndrome? This rare inherited disorder affects connective tissue (fibers that support and anchor organs and other bodily structures) throughout the body. Marfan syndrome most…
According to a recent article, the results of a new study shows that patients that are diagnosed with Marfan syndrome and an aortic aneurysm or dissection are at a…
When Kacey Lamphier was just a child, her father Edward passed away from a ruptured aorta. Following his death, Kacey and her family were also tested. It was during this…
The Marfan Foundation has a mission to improve the quality of life for patients living with Marfan syndrome and other aortic and vascular conditions. This month, in honor of Marfan Syndrome…
Allegra Sturdevant, age 21, averages thousands of views on her TikTok videos, many of which describe her experiences with Marfan syndrome. According to an article in The Daily Universe, the…
Climate change is an issue that has seen a lot of activism from the younger generations, as they will have to grow up and handle more of the burdens it…
According to a story from echolive.ie, ten year old Adam Terry from Cork, Ireland, has directly appealed to Micheal Martin, the Taoiseach (or prime minister) of the country in order…
Micah Gillings of Cambourne, Cambridgeshire was nineteen years old when he was diagnosed with an enlarged heart as evidenced in an X-ray taken in January 2020. An article appeared this…
February is recognized as Marfan Syndrome Awareness Month, which is an event intended to help spread awareness about Marfan syndrome among the general public and in the medical field. This…
Arterial Dissection Arterial dissections refer to the tearing of the inner wall of an artery. Pregnancy creates stress on the body's blood vessels and in rare cases dissections can occur.…
As COVID-19 continues to spread, the rush for a treatment or cure continues. Today, on August 4, there are 18.2 million diagnosed cases worldwide, with an associated 692,000 deaths.…
Scares That Care Scares That Care is a 501(c)(3) organization, first established in 2007 by Joe Ripple, dedicated to fighting the "monsters" of childhood illnesses, breast cancer, and burns. They support…
Education, research, support, and patient advocacy: these are just four of the amazing things that rare disease or disorder foundations offer. Many foundations seek to offer programs and resources to…
A recent report has documented a positive case study of a potential treatment option for one of the complications Marfan syndrome can cause. This report was published in the Journal of Oral Implantology. …
A study record from clinicaltrials.gov is investigating the appearance of lung problems in patients with disorders affecting connective tissue. While prior research has documented the appearance of interstitial lung disease…
According to a story from WebMD, the US Food and Drug Administration recently issued a warning about a class of antibiotic drugs called fluoroquinolones. They have been linked to an…
Isaiah Austin is a name many sports fans may be unfamiliar with. In 2014 that may have been a different story. Austin played basketball at Baylor. Standing 7’1”, with surprising…
According to a story from Healio, a recent study found that irbesartan, marketed under the name Avapro, can help reduce the rate at which the aorta, the largest blood vessel…
According to a story from Medpage Today, a recent study found that the drug Avapro, which is commonly used to treat high blood pressure, could also slow down the dilation…
According to a story from the Tampa Bay Times, Dr. Murray Shames, who works at the Tampa General Hospital, has been finding success using a new device to treatment dangerous…
The birth of a child can be one of the defining moments for a couple. It’s a milestone of that brings with it a series of surprises and lifestyle changes…
Researchers at Columbia University have found a way to apply CRISPR, a tool used in gene therapies, to new types of disease, reports News Medical. The study was carried out…
According to a story from PR Newswire, The Marfan Foundation and Backpack Health are partnering so that the foundation can begin the creation of a patient registry for people affected…
© Copyright Patient Worthy
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
