No one wants to hear, “You have a rare disease,” but my neurologist announced it when she diagnosed me with erythromelalgia. This neurovascular syndrome identified in 1 in 100,000 people produces extreme burning and redness in feet, hands and other extremities. Around 15% of cases are linked to the SCN-9 gene, some of which can be controlled by medication. Mine falls into the other 85%.
Although I struggled to pronounce the word, I was relieved to discover my symptoms had a name.
My feet and hands burn during flares as if being roasted from the inside while electrified lava courses through my veins. They swell and turn shades of red like autumn foliage. Heat and direct sunlight trigger episodes. Dangling my legs exacerbates the pain, which requires elevating them most of the time. Wearing socks and shoes spark incidents, so I don sandals. When I go out, I walk with a cane and sometimes use a wheelchair.
I have sensed a measure of what Jesus called the “unquenchable fire” in my own body.
Finding a diagnosis required several years and acquiring helpful treatment took longer. I grew despondent and adopted Christ’s prayer from the cross, “My God, my God, why have you forsaken me?”
I began meditating on the nails in Christ’s feet during my midnight flares and felt connected to his pain. Slowly, I appreciated what it means to unite with Christ in his suffering—and for him to unite with us in ours. This contemplation led to the Eucharist where I perceived the communion of his crucified body with my broken body gradually reshaping my faith.
Before long, I began considering other sacraments in relation to my rare disease.
Speaking with my parish priest about the sacrament of anointing made sense because it is a sacrament of healing. Maybe I failed to communicate the seriousness of my disease, but he refused and insisted this sacrament was reserved for the dying or people undergoing surgeries. I left shattered.
A couple years later, a different priest gladly anointed me. This sacrament did not heal my body, but it awakened faith and intensified my fortitude “to overcome the difficulties that go with the condition of serious illness,” as the Catechism of the Catholic Church promises. Through the grace of anointing, I would mysteriously participate with the whole church “in the saving work of Jesus.”
Reflecting on baptism became especially important because, as the catechism states, “the whole organism of the Christian’s supernatural life has its roots in” this sacrament. The same paragraph of the catechism says baptism conveys “sanctifying grace.” Through baptism my rare illness took on a holy significance. I started seeing it as the state of my life through which I would devote myself to God and others.
The sacrament of confirmation had deepened the roots of my baptismal grace and sealed me with the Holy Spirit. More than a rite of passage, confirmation had transformed my body with its rare disease into a temple of the Spirit. I even started dragging erythromelalgia with me to confession where I acknowledged anger and despair. The sacrament of reconciliation assured me of God’s merciful love.
Matrimony has been the most immediately meaningful sacrament. Then (as now) my wife accompanied me during flares, drove me to appointments and reassured me that we would survive financially. God’s grace became tangible through her selfless love.
Knowing Catholicism has patron saints for everything, I searched for an official saint of erythromelalgia but came up empty. So, I appointed one. Tradition holds St. Lawrence was martyred by being grilled on a gridiron. His courage and humor appealed to me as he reputedly quipped to his torturers, “Turn me over for I am done on this side.”
Erythromelalgia has irrevocably changed who I am, and I often miss my life before symptoms arose. But I have been blessed with kindhearted medical professionals and prayerful social care. That is not the case for everyone, so parishes can take the initiative to support people with rare conditions.
Visiting the sick is corporal work of mercy that Pope Leo describes as “not simply a philanthropic endeavor, but an ecclesial action through which the members of the Church ‘touch the suffering flesh of Christ.’”
Pope Francis demonstrated the disposition required for doing this when he famously embraced Vinicio Riva, who had Neurofibromatosis type 1. Riva welcomed the pope’s public embrace. “I felt like I was in paradise,” he said.
Specifically highlighting Rare Disease Day as well as commemorating the Feast of Our Lady of Lourdes each February 11 could provide occasions for parishes to uphold people dealing with rare disorders. Pope John Paul II designated this feast as World Day of the Sick, and Pope Leo’s 2026 message explores the “beauty of charity and the social dimension of compassion.”
There is nothing spiritually romantic or heroically adventurous about having a rare disease. They are physically arduous, emotionally grueling and spiritually onerous. They can also result in death. Riva died in 2024.
None of the sacraments have made my condition disappear. They are not magic, but they assure me of God’s love, connect me to the sufferings of Christ and make the communion of the saints real. Others might have similar experiences.
Recently, the Road to Emmaus story has shaped my vision of the connection between rare disease and the sacraments. Jesus walked with some of his disciples after his resurrection, but they were unable to recognize him. When he broke bread in a eucharistic fashion, they realized their traveling companion had been the risen Lord. But he had disappeared. They questioned each other, “Were not our hearts burning within us while he was talking to us on the road?” Through the sacraments, I have come to regard my burning feet not as a sign of God’s absence but of his presence.
Rare Disease Day is observed each year on the last day of February. The definition of a rare disorder, sometimes called orphan diseases due to the lack of research funding, varies by nation. The United States classifies them as conditions affecting fewer than 200,000 people, and the World Health Organization estimates more than “300 million people globally live with one of more than 7,000 rare diseases.”
Pinpointing a rare condition can be a drawn-out process. Some have identifiable genetic components. Others arise from infections, autoimmunities, environmental factors or idiopathic (unknown) origins. Countless appointments, painful testing procedures, misdiagnoses and failed treatment regimens create emotional distress and financial pressures.
Receiving any rare disorder diagnosis can be devastating, particularly for a parent. Many are fatal, and all are life-altering. People with rare syndromes frequently encounter skeptical family, friends and physicians.
There is no readymade Catholic spirituality for rare diseases, and no one wants blithe advice when facing life-changing questions. Ordering someone to “offer it up” without lending a loving hand can be worse than doing nothing. However, in my experience, the sacraments have helped me grapple with the physical anguish, emotional distress and spiritual uncertainty of having a rare condition.
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