Beyond the Visible: Tobias’ Story
Hereditary Hemorrhagic Telangiectasia (HHT) manifests differently in everyone. For Tobias, its early signs were subtle and dismissed. From a young age, he battled frequent headaches and struggled with breathlessness, even during light activity. On the playground, he was always the first to tire, leading to hurtful comments about his fitness and a significant blow to his self-esteem. As Tobias grew older, his symptoms intensified, becoming impossible to ignore.
He endured countless doctor’s visits and hospital stays, searching for answers. Finally, a critical discovery was made: his blood oxygen levels were dangerously low, plummeting to 60%—the equivalent of being at the summit of Mount Everest. Doctors initially suspected a heart condition, but further examination revealed his lungs were riddled with thousands of arteriovenous malformations (AVMs), ranging from microscopic to massive. Three dangerously large AVMs in his left lung were immediately embolized, an intervention that likely averted a fatal outcome. Despite this, the sheer number of remaining pulmonary AVMs meant a grim prognosis.
This led to Tobias’ HHT diagnosis. Over several years, he underwent more than fifteen lung procedures to mitigate the risk of complications and combat hypoxia (low oxygen levels).
Living with the Invisible Weight of HHT
Today, Tobias’s daily life is profoundly impacted by the widespread AVMs in his lungs, which cause persistent hypoxia. This leads to debilitating fatigue, constant heavy breathing, headaches, brain fog, and dizziness. While his brain AVMs currently remain asymptomatic, the relentless struggle with his lungs is a constant companion.
One of the greatest challenges Tobias faces is the invisibility of his symptoms. While some manifestations of HHT are evident, he desperately wants people to recognize the immense effort he expends and the accomplishments he achieves despite his profound disability. When he was diagnosed, doctors didn’t expect him to reach adulthood. After the initial embolization, he was bedridden, reliant on an oxygen mask. Yet, through grueling hours of training, he rebuilt his strength. He started with slow uphill walks, progressed to assisted push-ups with supplemental oxygen, and eventually achieved pull-ups with added weight.
Beyond greater awareness of HHT, Tobias yearns for people to understand its true debilitating nature. For many patients, the visible and hidden manifestations of this disease are a constant annoyance, social barrier, and potentially life-threatening. For individuals like Tobias, even simple tasks, such as putting on shoes, can lead to breathlessness.
Those with HHT often mask their discomfort to fit in and avoid social isolation, but the loneliness in this fight can be overwhelming. As Tobias describes it, HHT feels like an invisible war waged within his own body.
Tobias’s story is just one example of the hidden struggles faced by individuals living with HHT. This June, during HHT Awareness Month, you have the power to make a tangible difference.
Cure HHT’s Beyond the Visible campaign is working to bring vital awareness and support to those affected by this complex disease. Every donation, up to the first $100,000, will be matched, effectively doubling your impact and helping us fund critical research, provide patient resources, and advocating for better care.
Please donate today at curehht.org/donate. Your generosity can help turn the tide for patients like Tobias.