Tragic Loss Sparks Urgent Call for Awareness
A North Phoenix family is in mourning after 12-year-old Dylan Skalina tragically died following a brain aneurysm while trick-or-treating on Halloween night. Dylan's family believes that his death was closely tied to Ehlers-Danlos Syndrome (EDS), a rare genetic condition affecting connective tissue, which they hope to raise awareness about.
Understanding Ehlers-Danlos Syndrome (EDS)
EDS is often under-recognized and misunderstood. In Dylan’s case, he had both hypermobile EDS and vascular EDS, the latter posing serious risks such as ruptures and aneurysms because it can weaken blood vessels. As his mother, Megan Skalina, noted, "They think that it was the Ehlers-Danlos that caused the aneurysm because his vasculature just wasn’t strong enough." EDS can lead to complications that are not just physical but emotional and psychological as well.
The Reality of Living with EDS
Medical professionals often have limited knowledge of EDS, which can lead to improperly understood symptoms and inadequate care. Dr. David Saperstein, a neurologist, emphasized the need for increased awareness: "It’s not something that’s routinely tested for." Many EDS patients faced what researchers term "clinician-associated trauma," a situation where previous negative interactions with healthcare professionals lead to distress and anxiety, complicating future treatments.
The Hope for Future Awareness
The Skalinas are channeling their grief into advocacy. In the coming days, they will hold an Honor Walk, acknowledging organ donors. This gesture not only honors Dylan's memory but embodies a message of hope and awareness for others dealing with similar conditions. As Megan stated, "We’re getting there, but definitely more awareness is needed." By raising awareness, they aim to help others who might be navigating the complexities of EDS in silence.
Looking Ahead
Through their efforts, the Skalinas hope for a future where medical professionals recognize the seriousness of EDS and conduct routine screenings. An increase in understanding and awareness could lead to better outcomes for individuals like Dylan and his sisters, Kaylie and Alexis, who also live with the condition.
Their call to action extends beyond mere information; it’s a plea to examine the healthcare system's approach to rare disorders. As part of an ongoing effort to change how EDS is perceived and treated, the family emphasizes that every awareness campaign could potentially save a life.
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