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Daily Archives: June 15, 2015

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Yes Ankylosing Spondylitis, I Can Have a Healthy Baby

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

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…

Continue Reading Yes Ankylosing Spondylitis, I Can Have a Healthy Baby
What SubQ feels like without numbing cream #lol #living with cvid
Source: Patient Education Publication, Clinical Center, NIH

What SubQ feels like without numbing cream #lol #living with cvid

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:CVID/Rare Disease

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…

Continue Reading What SubQ feels like without numbing cream #lol #living with cvid
Katie Never Expected THIS at HAE Day

Katie Never Expected THIS at HAE Day

  • Post author:EmpatheticBadass
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

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…

Continue Reading Katie Never Expected THIS at HAE Day

How Long Will Oz Miss the Boat on HAE?

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

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…

Continue Reading How Long Will Oz Miss the Boat on HAE?
Grad School, Work, Service, AND Chronic Illnesses? You Bet

Grad School, Work, Service, AND Chronic Illnesses? You Bet

  • Post author:Rebekah
  • Post published:June 15, 2015
  • Post category:CVID/Rare Disease

  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…

Continue Reading Grad School, Work, Service, AND Chronic Illnesses? You Bet

Outrunning CVID!

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:CVID/Rare Disease

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…

Continue Reading Outrunning CVID!
Pill-Popping Swimmer Gets a Pass, Wins Medals

Pill-Popping Swimmer Gets a Pass, Wins Medals

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

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…

Continue Reading Pill-Popping Swimmer Gets a Pass, Wins Medals
Racing through Life with A.S.: V8 Supercar Driver Achieves his Dream

Racing through Life with A.S.: V8 Supercar Driver Achieves his Dream

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

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…

Continue Reading Racing through Life with A.S.: V8 Supercar Driver Achieves his Dream
Have You Herd? What Zebras and CVID patients have in common…
Source: National Geographic

Have You Herd? What Zebras and CVID patients have in common…

  • Post author:Rebekah
  • Post published:June 15, 2015
  • Post category:CVID/Rare Disease

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…

Continue Reading Have You Herd? What Zebras and CVID patients have in common…

These Shocking HAE Stories Will Make You Want To See Change

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

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…

Continue Reading These Shocking HAE Stories Will Make You Want To See Change
A Case of “Big Brother” Being Good for HAE Sufferers

A Case of “Big Brother” Being Good for HAE Sufferers

  • Post author:Patient Worthy Contributor
  • Post published:June 15, 2015
  • Post category:HAE/Rare Disease

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…

Continue Reading A Case of “Big Brother” Being Good for HAE Sufferers

How Your Socks Can Have Your Back

  • Post author:Rebekah
  • Post published:June 15, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

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…

Continue Reading How Your Socks Can Have Your Back

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