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A Leg Up on Kristy's Lymphedema

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Our sister Kristy needs surgery to help alleviate the lymphedema in her legs. This procedure could be life changing for her, and we are attempting to drum up some support – both emotional and financial - as the surgery is not covered by insurance.

KRISTY’S LYMPHEDEMA 

The oldest of four kids, Kristy was always setting the pace. As kids we would run free in the backyard, but no one could keep up with Kristy. As we got older Kristy was the first to do so many things. We always looked up to her, again setting the pace for all of us to follow.

Now our bright, strong older sister, the girl who was always setting the pace, has become a woman who has trouble with daily tasks. Kristy's fight with lymphedema has been a constant battle since the age of 16. Many of those close to Kristy may not even know she has lymphedema or the severity of it. Even as her siblings, we have often forgotten that she is struggling on a daily basis – she never complains, rarely talks about it, goes through great pains to hide her symptoms and suffers in silence. We would be reminded when we saw her quietly putting on her compression in the other room, wearing black tights on a hot Summer day, draping a towel over her feet at the pool or retreating from the group to elevate her legs.

As her condition worsens she feels pain in her feet constantly and day-to-day activities – walking, working, putting on shoes, or even standing for 15 minutes -  are obstacles. Her lymphedema dictates her entire day- what she does, how she dresses, what shoes she can wear. Despite it all, Kristy has remained optimistic and positive while maintaining her conditions and seeking out treatment.

LYMPHEDEMA

Lymphedema is a chronic and progressive disease that results in swelling in one or more parts of the body.  It can be hereditary (Primary Lymphedema) or it can occur after a surgical procedure or other physical trauma (Secondary Lymphedema, often found in breast cancer survivors).

It occurs when there is impairment to the lymphatic system, disrupting normal transport of fluid within the body. The impairment or blockage in the lymphatic system causes swelling in an arm or leg. Kristy’s lymphedema is primary, and manifested in her right leg out of nowhere while in High School.

Due to the poor lymphadic flow Kristy’s feet are constantly swollen- on bad days roughly 2x the size they would be normally. While she has done her best to cope with the pain on a daily basis, her leg swelling makes basic tasks difficult, and it is only progressing. The condition has spread from her right leg to her left, with each leg worsening.

Described as a hidden epidemic, lymphedema is under diagnosed and under recognized. Being extremely underfunded and misunderstood, basic necessities for lymphedema are rarely covered by insurance companies and Kristy has had countless fights to receive coverage for services and supplies required to maintain her condition -  such as a pump used to circulate fluids throughout her legs. Patients who suffer from lymphedema are often paying out-of-pocket for critical items deemed “not medically necessary” by insurance.

A GLIMMER OF HOPE: DR CORINNE BECKER

While finding no effective cure or relief for lymphedema, Kristy has spent the past 8 years traveling the world, looking for options and treatments to help manage her disease. Two years ago, thanks to a fellow lymphie who had written a blog (Lymphosaurus Rex), she finally found a viable opportunity, a revolutionary surgery pioneered by Dr Corinne Becker in France (http://www.lymphoedemacenter.com), which may resolve her disease and symptoms. After 16 years of hearing that nothing could be done, and that surgical options were “ineffective, messy and dangerous”, Dr. Becker has offered a glimmer of hope. Dr. Becker has had incredible results with her Lymph Node Transplant (ALNT) – a procedure which takes healthy lymph nodes from her Axilla (under the arm) and transfers them into her legs to restore her lymphatic system and circulate fluids as the body was designed. This surgery can be truly life changing for our sister. Needless to say, this surgery is not covered by insurance, nor are any of the tests, medications or rehab. 

TWO SURGERIES, FIVE WEEKS IN FRANCE + THREE MONTHS OF PT

The plan in France will take a total of five weeks. Kristy will have one week of pre-op visits including a LymphoMRI. She will have surgery on both her right leg and left leg separately, two weeks apart. In between the two surgeries, she will go for physical therapy every other day and she will be permitted to fly back to New York 7-10 days after her second surgery. Upon returning to New York she will begin three months of physical therapy.

COSTS (Excluding travel) (Updated)
ESTIMATED TOTAL COST: $51,350-59,900

Two Surgeries: $38,000 ($19,000 per leg, including hospital stays)
Lymph MRI Scans: $1,900
Physiotherapy in Paris: $900
Physical Therapy in NY: $6,950-15,500 (3/week for 3 months)
Post-surgery compression garments, medical supplies, medications: $3,600

Now is our chance to offer support to Kristy. We greatly appreciate any financial help you can offer our big sister. Thank you.
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Donations 

  • Niko Novick
    • $140 
    • 4 yrs
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Fundraising team: Team Lymphie (2)

Haley Cirrone
Organizer
Raised $600 from 10 donations
Commack, NY
Kristy Ann Cirrone
Beneficiary
Phil Cirrone
Team member
Raised $3,275 from 26 donations
This team raised $5,440 from 65 other donations.

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