Rare Disease Day




My husband (Jeff) has had a rare disease since childhood.  It's becoming more aggressive and he's required several surgeries in the past 6 months.  Most doctors know so little about it that they aren't even aware of its potential to spread into the lungs.  His disease is generally considered to be benign, unless the lungs become involved.  Then, it becomes high risk for cancer.  By the time this was discovered in his lung, cancer was already in place.  Pneumonia and a collapsed lung turned out to be a blessing in disguise, leading to his cancer being discovered at an early stage.  The tumor was removed via lobectomy in January.  While the cancer is hopefully gone, he'll require frequent and invasive procedures since the primary the disease is incurable and keeps him at high risk for future cancer.   

Because our lives have been overwhelmingly impacted by such a rare disease, I've decided to try and raise awareness and ask people to be advocates for patients with rare diseases.  There are several ways to do this:

1)  Support research and vote accordingly.  Stem cell research and similar issues are a hot topic, I know...but until you've had a loved with life threatening illness, you can't begin to imagine the lengths you'd go to to save their lives.

2)  Donate to support research for specific diseases.  Pick one at random, or donate to a cause you've been impacted by.  Go to this site to learn about various diseases that need research funding.

3)  If you're a parent, a concerned spouse, or friend, and you feel deep in your gut that something isn't right about your loved one's health...keep pushing for answers until you're satisfied.  Doctors are very limited by time and it's been proven that patients who have advocates gets better care.  Don't be intimidated by doctors!  Every patient has a right to understand their symptoms and/or illness and to be sure that appropriate measures are being taken to secure their well-being.

Three rare diseases have had a personal impact on my life.  They're all worthy causes for donations and research.  I've included links to their information.

Click here for info re: my husband's disease (Recurring Respiratory Papillomatosis)


Click here for info re: my god-daughter's disease (Spinal Muscular Atrophy)
* Also, check their personal blog for more information.  They're going to be raising money for a much needed handicap equipped vehicle...also a worthy opportunity for donations!


Click here for info about a friend's disease (CdLS)
* Check their personal website and blog to learn about their awareness campaigns.

1 comment:

  1. This is really inspiring, Angie! I've heard you talk about Ava before, and I've read about this other family on your blog but I didn't know how rare Jeff's disease was until all this stuff happened these past few months. I love that you're asking people do something...just creating any sort of awareness will help people to be more attentive when they come across others impacted by a disease or ailment, whether it's rare or not.

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