KFS Awareness

STATELINE – As with most of the 30 million Americans scattered across the country who suffer from one of 7,000 known rare diseases, it is difficult for patients with Klippel-Feil Syndrome – a rare spinal condition – to get together for an awareness event in one location.

That is, until one grassroots advocacy organization, Klippel-Feil Syndrome Freedom, decided to get creative. In honor of the third annual KFS Awareness Day on Aug. 6, the group founded by Belvidere resident Sharon Rose Nissley, asked patients to organize mini-walks in neighborhoods across the globe.  The event, known as the #KFSummertime Stroll takes place on or near Aug. 6.

KFS occurs in one out of every 42,000 births. It primarily affects the bones in the neck, but it also may involve abnormalities in organs like the heart, lungs or kidneys.

Klippel-Feil Syndrome is musculoskeletal in nature and affects the spine.  The severity of symptoms varies widely between patients, ranging from nonexistent to extremely debilitating. Because the disorder is mainly structural and is so rare, most patients struggle to find effective treatment.

“Although the walks will take place in various locations around the world, our cause is the same,” said Sharon Nissley, 44.

“We want to increase awareness about this condition among the general population and the medical community. By doing so, we hope to help encourage further research and improve viable treatment options.  Additionally, most people and families have never met another person with KFS who shares similar issues and similarities.  This event gives our community the opportunity to meet and advocate for our cause together. ”

In addition to raising awareness, the event raised several hundred dollars for Global Genes, an umbrella organization for all rare diseases, through the sale of KFS Summertime Stroll T-shirts internationally.

In the United States, a condition is considered rare if it affects fewer than 200,000 persons. Currently, 30 million Americans are living with rare diseases, equating to 1 out of every 10 people.

About Klippel-Feil Syndrom

Klippel-Feil Syndrome is a rare skeletal condition. It is diagnosed when two or more of the seven vertebrae in the neck are fused together congenitally, or from birth. KFS is degenerative and permanent. It is primarily musculoskeletal, but it may affect many other parts of the body, including the heart, kidneys, lungs, ears, eyes, bones, nerves, muscles, spinal cord and beyond.

Some patients with mild iterations of KFS may never experience significant symptoms, while others may suffer from chronic pain and severe disability, requiring multiple surgeries and a lifelong struggle.

Current data estimates that KFS affects 1 in 42,000 people.

Therefore, most doctors never see or treat a patient who has KFS and those who do often lack current, accurate information. Patients with KFS often feel as if they must become their own experts and may struggle to have their healthcare needs appropriately addressed.

In addition, due in part to lack of funds for research of rare diseases, there are currently no treatments or procedures specifically developed for the issues that KFS patients face. The treatments and procedures that patients do try are frequently ineffective and sometimes even harmful.

While there are a few healthcare centers that focus on KFS and associated conditions for infants and children, there is a gap in care for teens and adults. This is especially challenging because, as a degenerative condition, KFS may get worse as patients age. KFS requires palliative, comprehensive care, meaning multiple types of specialists for each congenital issue.

For example, one patient may need a cardiologist, neurosurgeon, neurologist, pain management specialist, otolaryngologist, nephrologist and a gastroenterologist.

Unfortunately, however, even the best clinicians often do not have the time or resources to fully handle such a complex condition, meaning KFS patients suffer while going from doctor to doctor seeking effective care.

This becomes exhausting and frustrating physically, mentally and financially for patients and families.

About Klippel-Feil Syndrome Freedom

KFS Freedom is an advocacy organization for patients with KFS and their families. KFS is a rare and often misunderstood birth defect that causes structural defects in the cervical spine as well as issues in other parts of the body, such as the kidneys or heart.

KFS Freedom aims to empower and unite patients and their families through peer support, education, research and advocacy for a lifetime of improved health care. The organization’s symbol of hope for freedom from KFS is the skeleton key.

Please find us online at http://www.facebook.com/KlippelFeilSyndromeFreedom and Twitter @KFS_Freedom.

About Global Genes

Global Genes™ is a leading rare disease patient advocacy organization.

The group’s mission is to eliminate the challenges of rare disease by providing patients with educational tools, building awareness, providing critical connections to people and resources, and through investment in technologies that will positively impact affected patients and families.

Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 35 million Americans and over 350 million people worldwide.

Please visit: http://globalgenes.org/ and Twitter @GlobalGenes.


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