Upon getting a diagnosis of a chronic illness, like CVID, or Common Variable Immune Deficiency, it's easy to get overwhelmed. Bogged down by questions in your head--What do I do…
Over time, you may have noticed that you have neck pain, and that you’re stiffer in the morning than you are by the afternoon. The most common symptom of ankylosing…
Living with CVID? Learning to manage? PatientWorthy is looking for you on Instagram if you are living with Common Variable Immunodeficiency Disease, CVID. #PatientWorthy to share your photos with us! And…
Living the dream as a future baseball All Star, Franklin Gutiérrez, a.k.a. "Guti" was on top of the world. In 2000 the Cleveland Indians signed amateur free agent Franklin Gutiérrez,…
Sudden HAE attacks can result in hospitalization or a few days in bed at home; forcing many patients to miss work or school.A study was conducted in Germany, Denmark, and…
Her Brother Said The Diagnosis Was Impossible; She Wasn't So Sure In February of 2006, Sheryl Stein of Arlington, Virginia, knew something was wrong. She was suffering from nosebleeds and…
Many people with hereditary angioedema (HAE) will tell you that really aren't sure what causes their attacks, but they can identify some common triggers such as stress, anxiety, minor trauma…
Doctors at Global Hospitals in Mumbai, India, have achieved a rare feat in spinal surgery. For the first time, an expert team of surgeons performed minimal access spine surgery on…
Ankylosing spondylitis (A.S.) is a form of arthritis that affects the spine, although other joints can become involved. It causes inflammation of the spinal joints that can lead to severe,…
If you are considering pregnancy while managing ankylosing spondylitis, you may have a lot of questions, such as will you have the typical back pain that most pregnant women have, or…
Is SubQ part of your CVID treatment plan? Have you ever run out of numbing cream before an injection? Are you a fan of Jim Carey? If you answered, "yes" to…
After six years of misdiagnoses and crushing disappointment, a doctor finally figured out that Katie had a rare genetic condition centered around a protein called C1 inhibitor. So many emotions…
Sufferers of the rare and potentially life-threatening disease Hereditary angioedema (HAE) are raising red flags because Australia is lagging behind on diagnosing and treating the disease. HAE allows the body's…
Meet Amanda! Amanda’s vlog (video blog), ShAMANDAgans, helps her keep in touch with friends and family and share her story. She’s an ambitious and cheerful graduate student; going to…
Runner David Brumley was diagnosed with Common Variable Immune Deficiency (CVID) in 2008, and figured getting in shape couldn't make his health any worse than it already was. He has been…
At one point, gold-medal winning Singapore swimmer Clement Lim was bedridden for two days because he has Ankylosing Spondylitis, or A.S. "I was actually quite afraid that I'd never be…
Imagine being an incredibly happy and active 8 year old who loves sports. Now imagine your knees and ankles swelling up. You look down at your hands and your fingers…
How did CVID patients earn their stripes? Zebras are viewed as unique. They are only found in limited locations with specific environments; they flaunt stripes that are iconic to their…
There are some crazy diseases out in the world today, and hereditary angioedema, or HAE, is one of them. To see the symptoms in action, you may have to rub your…
Suffering From HAE?! Biofeedback Reporting May Save Your Life! There's a lot of buzz on BioRx, a national specialty pharmaceutical company, based in Cincinnati, Ohio. It's established a successful Biofeedback…
Patients with Ankylosing Spondylitis can suffer terrible backaches. Heating pads are an easy option to help increase blood flow and alleviate some of the pain, at least temporarily. Electronic heating pads…
You can't always be prepared for an emergency- that is kind of an oxymoron. You can however think ahead and put in place an emergency plan. During a crisis, seconds really count,…
In the fall of 1991, Kathy gave birth to a beautiful baby boy named Isaac. But Kathy and her husband knew something wasn't right. Isaac was their third child. Born…
They say pictures are worth a thousand words. Scroll through these images for a chuckle. Who doesn't love naps? When thinking about how impossible your diagnosis was... Out and about…
When people hear disease, sickness, or chronic illness, 9/10 times they think of weakness. They sadly only look at what they can see, but neglect the heart. Truth is people…
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.
