A Cherished Memory: A Boating Trip with My Brother Sam
Eleven years ago, in 2013, I went to Wolli Creek near Tempe station with my brother Sam. Sam had acquired a boat, and he suggested we row it down Wolli Creek to Nanny Goat Hill. It was a beautiful, sun-dappled day. We played chess, navigated through the mangroves, and arrived at an island where bats slept in trees, and pillars of leaves formed cave-like structures around us. This trip down Wolli Creek is one of my most cherished memories with Sam, captured on video, but now it has become a sad reminder of the loss of my brother. View Sam´s PDF file here
Sam Treffry’s Tragic End: A Battle with Empty Nose Syndrome
Just two days ago, my brother Sam Treffry took his own life. In his suicide note, he revealed that he had been diagnosed with a severe medical condition known as (ENS). This rare, incurable, and extremely challenging disease is well-documented, with many cases of sufferers tragically resorting to suicide.
Living with ENS: The Hidden Struggle Sam Faced
Sam’s note described his battle with Empty Nose Syndrome. He had to withdraw from his university studies and quit his jobs because he could no longer cope. He struggled to sleep, fell into a deep depression, and withdrew from his family. My brother died at 34 years old. It’s unclear how long he had known about the diagnosis, but it appeared recent, and it triggered a rapid decline in his mental and physical health. ENS is a condition that arises from routine nasal surgeries that remove tissue. Sam had several nasal operations during his teenage years to address sinus issues and correct his septum, which eventually led to this cruel disease.
The Insomnia and Fatigue That ENS Inflicted on Sam
Before his death, Sam had been working in both a hospital and a hotel and was studying a degree in town planning. On the surface, he seemed happy, but he was always tired—a common symptom of ENS due to the insomnia caused by breathing difficulties. My brother was suffering in silence, and the pain drove him to an unimaginable decision. Sam’s suicide has devastated our family. We never knew about his ENS diagnosis and therefore never had the opportunity to help him properly. The silent suffering he endured was incomprehensible.
A Heartfelt Goodbye: A Brother’s Tribute to Sam Treffry
I love you, Sam. I miss you more than words can express. I wish you had reached out to me. I would have done anything to take care of you, ensuring you got the help, love, and care you deserved. But you didn’t reach out, and now you’re gone. I’ll hold on to our cherished memories until we meet again, where I know you’ll be waiting for me. You’ll always live on in my heart, my thoughts, my dreams, and in the tears I’ve shed for you.
Sam’s Story: A Call to Awareness for Empty Nose Syndrome
Will posted in the Group Empty Nose Syndrome Awareness: "I wanted to share Sam’s story. My younger brother ended his life two days ago. His note revealed the hidden ENS diagnosis that had led him to stop working and drop out of university. My family had no idea he was suffering from this condition, which led to a profound shock for all of us. Sam’s life changed after a series of routine nasal surgeries during his teenage years to correct sinus issues and snoring. These surgeries were performed by Dr. Mooney, a doctor later jailed for malpractice and linked to two other deaths during nasal surgery. Recently, this doctor has begun practicing again in Sydney.
The Downward Spiral of ENS: Self-Medication, Depression, and Low Self-Esteem
As a result of the nasal surgeries, my brother fell into a cycle of self-medication, depression, and low self-esteem. His tragic end at 34 years old remains a deeply painful reminder of the horrors of Empty Nose Syndrome (ENS). Although we don’t know exactly how long he had known about his ENS diagnosis, it appears he had only recently been informed, prompting a rapid and heartbreaking decline. Before his death, he had been working in a hospital, studying at university, and seemed outwardly content, despite his constant fatigue, a hidden symptom of his suffering.
Sharing Sam’s Story: Raising Awareness About ENS
I wanted to join this group and share Sam’s story in the hope that it can raise awareness. My brother’s sudden passing was a complete shock, and the fact that we never knew about his ENS diagnosis until it was too late only deepens our sorrow.
Sam,s departure October 1, 2024 serves as a sobering reminder of the importance of awareness, early diagnosis, and support for those living with this debilitating condition.
Doloretta “Dory” Ruggeri Lodge var en kärleksfull och aktiv kvinna som levde ett rikt liv, hängiven sin familj och njöt av vardagens rutiner, som att laga mat och promenera med sin hund. Den 28 december 2018 genomgick hon en näskauterisering utförd av en öron-, näs- och halsläkare (ÖNH-specialist). Hennes läkare försäkrade henne om att det var ett enkelt och riskfritt ingrepp med en snabb återhämtning. Men detta ingrepp blev början på en rad förödande hälsoproblem som till slut ledde till en tragedi. Läs mer om Dory i denna PDF-fil
Omedelbart efter kauteriseringen av sina näsmusslor började Dory uppleva svåra och oväntade symtom. Hon kunde inte sova och kände en ständig känsla av torrhet och kvävning. Hon beskrev det som om hennes näsa hade "en miljon små skärsår," en konstant smärta som gjorde det svårt för henne att fungera.
I hopp om lindring återvände hon flera gånger till ÖNH-läkaren, men varje gång fick hon höra att allt såg bra ut och att det inte fanns någon medicinsk förklaring till hennes symtom. Hon hänvisades till en allmänläkare, som i sin tur skickade henne vidare till andra specialister, inklusive en terapeut och en sömnexpert. Tyvärr gav ingen av dessa remisser några svar, och hon fick gång på gång höra att hennes symtom troligen berodde på ångest eller depression.
Se Dorys berättelse i videon nedan, lyssna efter 12 minuter och 37 sekunder.
Under flera månader förändrades Dorys liv drastiskt. Från att ha varit en livfull kvinna som njöt av familjesammankomster blev hon tillbakadragen och isolerad, ovillig att umgås med sina nära och kära av skam över sitt försämrade tillstånd. Hennes symtom förvärrades gradvis – hon kämpade med ständig andnöd, oförmåga att sova, aptitlöshet och en växande känsla av hopplöshet. Hon prövade alla behandlingar som hennes läkare rekommenderade, inklusive ångestdämpande mediciner, antidepressiva, meditation och livsstilsförändringar som motion – men hennes extrema sömnbrist gjorde det nästintill omöjligt.
I sin desperation började Dory söka svar på egen hand. Sent om nätterna, oförmögen att sova, grävde hon djupt på internet och snubblade till slut över information om ett tillstånd kallat Empty Nose Syndrome (ENS). ENS är en allvarlig iatrogen sjukdom som kan uppstå när viktiga nässtrukturer förloras, vilket leder till kvävningskänslor och extrem torrhet. När Dory läste om syndromet kände hon igen sina egna symtom och insåg att hon äntligen hade hittat orsaken till sitt lidande.
Hennes upptäckt ledde henne till en specialist i Los Angeles som var insatt i ENS och erbjöd en kirurgisk behandling som kunde lindra hennes symtom. Dory var beredd att ta den ekonomiska och känslomässiga risken med att resa tvärs över landet, eftersom detta var hennes sista hopp om att återhämta sig. Men strax innan den planerade operationen fick hon ett samtal från specialistens mottagning – de förklarade att även om ingreppet kunde hjälpa, fanns det inga garantier för att hon skulle återfå sitt normala liv. Denna osäkerhet slog hårt mot Dory, som redan i månader hade kämpat med symtom som läkare avfärdat. Nu kändes även möjligheten till lindring utom räckhåll.
På dagen för sin bortgång fann hennes familj ett brev där hon uttryckte sin förtvivlan och frustration. Hennes dotter berättade att om Dory hade fått mer information om riskerna med näsoperationer, eller om hennes symtom hade tagits på allvar tidigare, hade utgången kunnat bli en annan. Dorys tragiska öde belyser vikten av att läkare ger noggrann information om kirurgiska risker och att sjukvården erkänner och behandlar Empty Nose Syndrome med empati och förståelse.
Scott Gaffer’s life is a powerful and poignant example of the hidden struggles endured by those with invisible illnesses. Born with a brilliant mind, quick wit, and boundless curiosity, Scott was a talented engineer from Austin, Texas, with a bright future ahead. However, his life was irrevocably altered in 2010 when he got Empty Nose Syndrome (ENS), a debilitating condition that ultimately impacted every aspect of his life.
The Development of ENS and the Initial Struggle
Scott’s journey with ENS began after he underwent a turbinate reduction surgery in 2010. As a child, Scott suffered frequent sinus infections and had trouble breathing through one nostril. In addition to his health issues, he felt self-conscious about the appearance of his nose, which led him to seek surgical intervention to improve both his breathing and appearance. Read Scott´s PDF file here
Despite choosing a reputable surgeon and what was supposed to be a conservative approach, Scott experienced unusual symptoms immediately following the surgery. He mentioned feeling as though air was moving too freely through his nose, describing it as similar to “air going through a straw.” Although the surgeon assured him that his nose appeared structurally sound, Scott remained deeply uncomfortable. This moment marked the beginning of a prolonged struggle, as Scott sought solutions and explanations that doctors failed to provide.
Scott’s Online Advocacy and Research
Over the years, Scott became an active participant in the online ENS community, joining forums like the “Empty Nose Syndrome Awareness” group on Facebook. His contributions were invaluable to fellow sufferers, as he shared in-depth accounts of his treatments, experimental therapies, supplements, and medications. Those who interacted with Scott online described him as compassionate, dedicated, and generous in sharing his experiences to help others. Despite his personal suffering, he retained a sense of humor and intellectual curiosity that inspired others in the community.
Scott’s commitment to understanding his condition was unwavering. He approached his research with the precision of an engineer, meticulously documenting every treatment and outcome. His contributions showcased his intelligence, thoughtfulness, and desire to make a difference, not only for himself but for others grappling with the complexities of ENS.
ENS: An Invisible Illness with Devastating Effects
Empty Nose Syndrome is particularly challenging because it is an “invisible” illness, meaning there are no obvious physical signs of the suffering it causes. Individuals with ENS experience sensations of suffocation, chronic pain, and difficulty breathing. This makes it difficult for others to understand the intensity of their symptoms, which are, as Scott’s mother described, “agonizing and so far into the ordinary human experience that it’s difficult to accurately describe.”
For Scott, the symptoms of ENS affected not only his physical health but also his mental well-being. His sleep became increasingly disrupted, which led to a cascade of other health issues, including gastrointestinal discomfort, weight gain, and persistent fatigue. Despite his efforts to convey his suffering to family and friends, Scott felt isolated and misunderstood. Outwardly, he appeared to have a promising career and a supportive social network, but the relentless symptoms of ENS made it difficult for him to experience the life he had once envisioned.
A Devoted Son and Loyal Friend
Scott’s mother, Beth Gaffer, shared fond memories of her son, describing him as exceptionally intelligent, funny, and helpful. Scott was the kind of person who brought joy into his home, whether by fixing things around the house or by lifting the spirits of those around him. His mother recalls how he would notice what needed to be done around the home and take it upon himself to make improvements. His friends, too, remember his warmth, humor, and loyalty. Although Scott did not have a large social circle, he maintained close and meaningful friendships, often treating his friends like family.
Beth also recounted Scott’s playful side, mentioning a photo of him humorously trying to dunk a large MoonPie into a glass, capturing his lighthearted nature even in moments of hardship. Scott’s friends missed the laughter and companionship he once brought to their lives, with one friend lamenting that he missed “the Scott I knew and loved.”
Searching for Solutions: A Medical Odyssey
In his quest for relief, Scott sought out numerous doctors, undergoing various treatments and procedures. Initially, he returned to the surgeon who performed his first operation, but he soon grew disillusioned when his symptoms were dismissed as inconsequential. Driven by a need to reclaim his health, Scott sought out ENS-friendly doctors and underwent a second nasal surgery. Despite these efforts, his symptoms persisted, and his frustration grew as he struggled to find answers and effective treatments.
In 2016, Scott traveled to Johns Hopkins for further treatment, hoping for a breakthrough. However, his hope began to wane as he came to the painful realization that his condition might be irreversible. After this period, his family began to notice significant changes in his demeanor, as his once frequent visits and cheerful presence became increasingly rare. He confided in friends and family that he felt like he had lost the healthy, happy life he once knew.
A Private Battle with Mental Health
Scott’s physical struggles with ENS were accompanied by a profound emotional toll. The pain, isolation, and inability to find relief weighed heavily on him. His mother described how Scott became more withdrawn, spending long periods of time in solitude and sometimes ceasing communication altogether. During one visit, his family found him lying on the floor, exhausted and visibly unwell, yet Scott refrained from openly discussing the true extent of his suffering with them. He carried the weight of his illness privately, finding solace only in the support of online communities where others understood his condition.
In his final note, Scott expressed that he was “sick and tired of being sick and tired” and felt left behind as others around him moved forward in life. Watching friends find relationships, start families, and progress in their careers made him feel as though he would never achieve the milestones he once dreamed of. He poignantly wrote, “My health broke before my spirit,” a testament to the immense toll ENS had taken on him.
A Mother’s Message to Those Affected by ENS
In the wake of her son’s passing, Beth has become an advocate for understanding and support for individuals suffering from ENS. She urges friends and family members of ENS sufferers to ask questions, listen deeply, and be present for their loved ones. The journey of an ENS patient can be isolating, as they may hide their suffering to avoid burdening others or because they feel misunderstood. Beth’s message is clear: ENS, like many invisible illnesses, requires empathy and awareness from the people around those affected. The appearance of normalcy often masks profound suffering, and her hope is that others will take the time to understand the realities faced by individuals like Scott.
Legacy and Lessons
Scott Gaffer’s story is a reminder of the silent battles faced by countless individuals who live with invisible illnesses. His courage, kindness, and intelligence touched the lives of those who knew him and even many who didn’t, through his contributions to the ENS community. His life underscores the importance of compassion, especially toward those whose suffering isn’t outwardly visible. His mother’s advocacy, in honor of his memory, aims to shed light on the devastating effects of ENS and to foster a more empathetic world for all who endure such invisible struggles.
Scott’s legacy lives on in the memories of his family and friends and in the ENS community he supported with so much dedication. His story highlights the urgent need for continued awareness, understanding, and support for those with ENS. In honoring Scott’s life, we remember the importance of compassion, patience, and love for those silently fighting their own battles.
