The Atypical HUS Foundation

Seems that I'm busy mending things at this time of year - mittens and holes in pockets, to name a few items. When my fingers are flying with needle and thread, my thoughts are flying too...swirling around a variety of topics, it's then that my thoughts leap from one train of thought to another. Mending pockets to mending fences to ... things un-mendable.


During the holidays, people struggling with life challenges all too often heard a hollow ring in others' joy-filled messages of cheer. These are tough times for our nation, our economy, our friends or neighbors, and perhaps even ourselves. Sometimes the shadowy clouds of doubt, loss, fear or uncertainty obscures your vision of a bright future. Consider the parable of "The Broken Window" when you face discouragement.... and look beyond for the glimmers of light.

You gaze in dismay at the broken window shattered into countless pieces, now laying at your feet. As you exhale a deep breath, you consider several options - none of which are particularly palatable. Disappointment and anger wash over you along with a flood of other negative emotions. In a tumultuous sea of emotions, a black mood settles as you recognize the work, effort, and cost now necessary - all because of that broken window.


Quickly following is a flurry of "could of, should of, what if, if onlys" as you backtrack your actions (or inactions) trying to rationalize your situation. Really now - how productive is that? Does it repair the window or make the damage disappear, as if by magic? You realize that the sharp shards of shattered glass MUST be swept up, so as not to cause injury to yourself or others. But how to best accomplish that goal? You protect yourself by covering the soft, sensitive skin on your hands by wearing work gloves. Congratulating yourself quickly fades as you realize that your protective gloves render you clumsy enough to miss smaller shards that your eagle eyes can still recognize as a potential danger zone.


Sweep all the broken glass away, depositing it efficiently and quickly into the trash? Actually, doesn't that just move the sharp, penetrating pieces of glass into a different receptacle - waiting to pierce through the unsuspecting family or other folk who are unaware of the danger lurking just below the surface?
You hold the power and can decide how best to handle the damage. There's only so much physical and spiritual energy you can muster - so spark the flame of your creative problem-solving as you examine your options of dealing with a broken window.


The window IS broken, irreparable and undeniably ruined. Its damage has blocked your clarity of vision, your world view is permanently obscured to some degree. Why not choose to carefully pick up the shattered pieces strewn about and carefully arrange the larger pieces, thoughtfully crafting a stained glass style window?
You'll need to spend time and effort in planning and executing your design. Some pieces will be awkward, not fitting your planned vision and thus requiring additional effort to reshape them. If a piece doesn't fit in, it's not as it you can pound in a glass piece until it fits - you recognize that you'll get hurt in the process as applied force only makes the glass shatter into smaller pieces (making more work for you!). After much thought, time, and effort, you'll have your own individual expression of art glass window - a lovely mosaic made from the shattered ruin.


True, you can't see through the art glass window as clearly as the past clarity of the original window....and yes, tiny slivers of broken glass remain a hazard. The solid, intact window is no more - gone, never to return. Accept that no matter how carefully you try to dispose of those last penetrating glass splinters, a few might always remain a potential danger that could cause damage or pain to the unsuspecting who haphazardly dig about.
Perhaps this parable brings about thoughts of your own personal or professional 'broken window' - any sort of (real or perceived) loss or barrier to the successful, fulfilling life you've envisioned for yourself or your family. Surveying the ruins left after a window has broken, remember to take time to first gather resources and strength, acknowledging that you'll need all your talents find new avenues or solutions.


Craft a new vision, press onward and upward toward a new reality. It may not be the journey you had imagined, but the new destination may allow a keen appreciation for the unexpected scenic views. Create a beautiful pattern, let me know how you enjoy your new world view!

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Comment by Svetlana Finley on January 11, 2010 at 12:25pm
Awesome, thank you!!
Comment by Cheryl Biermann on January 10, 2010 at 11:53pm
Beautiful. You have just described life...

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WELCOME - JOIN US!

The Atypical HUS Foundation encourages patients and investigators to share information and explore options/resources as we work together to gain insight into this rare complement disorder. By increasing contact opportunities with researchers and medical personnel interested in helping the aHUS community, our stories foster a better understanding of atypical hemolytic uremic syndrome.

Sharing information, inspiration and support for one another, we seek to gather together people and knowledge as we strive to improve the lives of patients and families dealing with a diagnosis of aHUS.


NEW DIAGNOSIS OF aHUS?
Be proactive! Get the medical basics of aHUS, what lab values to monitor, and areas of concern...check out the "aHUS Bootcamp" and "About aHUS" tabs at the top of this page!
If your doctor has never treated a case of aHUS, please print out our 'Doc to Doc Registry' and ask him/her to contact a physician versed in the complexities of aHUS and new options for 2011 genetic testing and treatment.

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NOTE: Our 'Send a Message" function on each Member's page allows for private discussion of personal content. As with any social network, be cautious about giving personal contact information (home email info, phone number) until you have an established relationship with another person, organization, or associated website.

 

Did you know...

CFH (Serum Complement Factor H) is a regulatory protein. The secreted protein product of CFH consists of 20 repetitive units named "short consensus repeats" or SCRs (each approximately 60 amino acids). In patients with aHUS the last 5 "pearls" in the twenty pearl strand protein, SCR16 - SCR20, should bind to protect cells but do not- they are defective in one or more of the last 5 SCR locations. If they cannot bind or stick to the kidney to protect that tissue, the platelets clump into clots that affect the glomeruli of the kidney -potentially causing acute renal failure.
  
• • • • • • • • • • • •
  
It is estimated that there are about 2 cases of aHUS in the U.S. per 1,000,000 of population, and about 60% of aHUS patients are diagnosed as children. The condition is potentially life threatening, and either can be chronic or can recur at intervals.
  
more factoids...

Help us fight the battle

Your donation of $295.for an aHUS pearl bracelet will directly fund research to help aHUSpatient and their families. Each bracelet has an appraised value of $925, and is offered with your gift of $295. Note:  For shipping outside the USA, please add $25. to cover international shipping costs.

(Note: Bracelets do not qualify as tax deductible donations under IRS regulations.)

Normally, aHUS pearl bracelets to be made-to-order and as such expect a 4 to 6 week window before your custom bracelet is shipped.  In a rush?  Contact info@atypicalhus.org with your request and details.

 

 Donations of a specific dollar amount are welcome-every dollar will help aHUS research efforts supported by The Atypical HUS Foundation at www.atypicalhus.org.


Donations may be made via credit card or Paypal. If you prefer, checks made payable to The Atypical HUS Foundation may be mailed to:

The Atypical HUS Foundation
C/O Deborah Lewis
PO Box 333
Barnhart, MO 63012


For pearl bracelet orders, please allow extra time for processing checks. Questions about aHUS donations? Please email info@atypicalhus.org

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