Friday, February 28, 2014

RARE DISEASE DAY -- The Many Faces of Rare




 QUIETLY turn Your eyes to me and be compassionate toward me
    because I am lonely and persecuted.
 ~ Psalm 25:16, VOICE ~

TODAY is World Rare Disease Day!

What’s so rare about rare disorders?  What’s so different about the people living with them?  Just like any other human on the face of the planet, those living with a diagnosis that affects less than 200,000 people nationwide are looking for love, acceptance, and a good quality of life.  Lord willing, they wake each morning, just like any other person.   

Unfortunately, that’s often where the common life ends, and the rare begins.

In our house, rare disease may look like the top 2 shelves of your linen closet being occupied by $15,000 – $20,000 of recombinant clotting factor along with butterfly needles, 10 cc syringes, saline flushes, alcohol swabs, gauze pads, bandages, tourniquets, and the ugly Sharps disposal container.

It may look like having to get an IV before school every other day, just to prevent spontaneous bleeding episodes.

Rare disease may look like a call from the school because there is an episode during class that needs to be treated or looked at right away. 

While rare disease may seem like it’s not even there one day, it will turn your world upside down the next.  Rare may have you beginning your day as usual, and finding yourself in the hospital, fighting for your life by dinner time.

Although all your friends get their physicals once a year or only see the doctor when they are ill, rare disease has a whole host of specialists, not all necessarily communicating well amongst each other.  Doctors and therapists are part of your monthly, often weekly schedule.

Science advances and ushers hope along with it.  But with the high financial, emotional and physical toll of rare disease, you had better have your hope pinned on something much greater.


Or rare disease might look something like this.  Your toddler gets an ear infection.  The pediatrician prescribes an antibiotic.  The next night, you find yourself in an emergency room, your child covered in frightening purple splotches and rash.  The doctors inform you that this allergic reaction she is having is so severe, if she were ever exposed to penicillin again, no epinephrine or other attempt at rescue would save her.

Suddenly, personal immunity and typical infections are something potentially lethal to your child.  Plans are put in place to use an immune tolerance protocol inpatient at the ICU, should it ever be needed.  Something like a strep culture makes your heart race.  Even your pediatrician dreads such an infection in your child.

For the remainder of your child’s life, there is an undercurrent of stress related to general health that typical families not living with erythema multiforme are able to avoid.

These are just 2 of the faces of rare disease, and they are my story.  Two of my 3 children live with the challenges of rare disorders, as do nearly half of all the families our ministry serves.  Diagnoses like cerebral palsy, mitochondrial disease, juvenile diabetes, epilepsy, spina bifida, celiac disease, and fragile X syndrome all fall under this umbrella.

Families like us may not even have a treatment for our child’s diagnosis, let alone a cure.  We are financially, emotionally, physically and spiritually overtaxed.  We love much, and we try to keep our fears at bay.

This, THIS is why Snappin’ Ministries gets behind World RareDisease Day every year with increasing measure.  We are children of God, just like everyone else.  Ending the isolation of raising a child with any sort of special need is a core piece of our organization's commitment.  That’s why we can get behind a slogan like this one adopted by NORD (the National Organization for Rare Disorders), "Alone we are rare, together we are strong". 

Our prayer is that today, each person who touches this ministry will also reach out to touch the people around them with just a simple “Rare Act of Kindness”, spreading the basic information about rare diagnoses.  Small steps to build awareness will transform hearts and minds over time.

We each leave a ripple in the pond in which we are dropped.  Won’t you please make a ripple for Rare Disease Day today?

PRAY:  Thank You, Father that You have uniquely made each person whom You dearly love.  Energize us to band together today for those fighting the battle with rare disorders.  Make us remember to spread awareness to just our little circle of people around us.  And THANK YOU that You give us hope beyond any treatment or cure for our children.




Snappin' Ministries encourages YOU to print and/or share this "Rare Act of Kindness" card as you do a kind gesture for another person today.


*All facts and statistics on the "Rare Act of Kindness" card is provided through NORD.  Learn more about the global Rare Disease Day campaign at http://www.rarediseaseday.org/









3 comments:

  1. I want you to know your efforts are much appreciated; they are not missed or overlooked. Thank you that you stand up for those of us who cannot do all you are doing for rare disease and raising awareness in Wisconsin. Thank you for obtaining the proclamation for our state - WI. I want your organization and member to know because I found your site, even though it may be small (here in westcentral WI) I was to copy your "rare act of kindness" card and compile and handout >3 dozen Rare Acts of Kindness (in the form of microwave popcorn packets. I posted Rare Disease Day posters at various place in the nearest town(city) and info. on Klippel-Feil Syndrome - my rare disease. I hope this year will be a catalyst for next year #7 of Rare Disease Awareness. It takes people like you - to stand up and do - for those of us who cannot do all that is involved in bringing about events and awareness like this. THANK YOU FOR CARING for ALL those with rare diseases in Wisconsin .

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  2. Wanting you to know I passed out Rare Acts of Kindness cards on behalf of myself (KFS), my cousin (rare blood cancer), and
    a prior high-school classmate (37 yrs. ago) who suffers with ALS - to raise awareness for Rare Disease and the day. It was a small contribution but all of what I could physically do in a day. I hope WI. will grow in recognition and support for the day and the need for research, treatments, and care.

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  3. Thanking your members for posting their pictures showing support for rare disease day on the Handprints-Across-America website of NORDS - showing Wisconsin supports Rare Disease and the need for research, treatments, and increased knowledge of these 7000 diseases!

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