Helping my children with Fabry find ways to combat depression

We were excited the first time our patient education liaison from pharmaceutical company Sanofi offered to take us out to a fancy restaurant. Several members of my family had just been diagnosed with Fabry disease, and we planned to talk about the condition over dinner. As a family of seven, we rarely get a free meal like that. We showed up dressed for a special night and thoroughly enjoyed appetizers, entrees, and soft drinks with refills. My kids were loving this perk of having a rare disease.

But what was lost on the young ones wasn’t so lost on my eldest sons, my husband, and me. The chronic symptoms and lifelong difficulties caused by our family’s gene mutation were daunting. I had never heard of some of these things. Neuropathy? Corneal whorls? Angiokeratomas? Anhidrosis? It was good to have someone knowledgeable explaining all of this to us over candied bacon and roasted garlic hummus.

As I thumbed through the Sanofi booklet of information, one word jumped off the page at me: depression. Though it wasn’t highlighted or described as a symptom of Fabry, the data showed a higher risk for depression among men and women with Fabry. Sigh. Depression runs in my family already. So, loaded with pictographs, testimonials, and in-depth explanations of our lysosomal storage disorder, I walked away from that dinner with a clearer understanding of the disease and a heightened resolve to stay vigilant about my family’s mental health.

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September 8, 2023 News by Marisa Wexler, MS

Addressing pain, depression may aid people with Fabry disease

My kids with Fabry bear the weight of an unpredictable future, chronic relentless pain, tiresome treatment experiments, sleep deprivation, ringing in the ears, heat intolerance, and more. The burden of Fabry disease directly affects everyday life and can bring a person down.

My own heart has agonized over wanting to “kiss it and make it all better,” but I can’t. What remedy can I offer? What will abate the emotional pain woven into this lifelong illness? I am always looking for ways to combat depression in my own life and to equip my kids with tools for staying afloat, mentally and emotionally.

Offering grace to our past self

Recently, I was gifted “Some Kind of Crazy: An Unforgettable Story of Profound Brokenness and Breathtaking Grace” by Terry Wardle. As someone who is always looking for tools to combat anxiety and depression, I found new hope in this page-turner.

One strategy Wardle offers for finding wholeness in a broken, hurting existence is the ability to revisit a memory that has triggered anxiety. He recommends that, while giving ourselves permission to feel the raw pain and intense distress of that moment, we visit the person we were then, bringing love, acceptance, and hope that we have gained over time. It’s as if we can give that person the grace they (we) needed in that critical moment and didn’t receive.

As a Christian, Wardle describes seeing not only himself in his memories; in the moments when he felt most destroyed, he also saw Jesus with him in the crucible. Jesus was there to lend compassion and to pour a balm of unconditional love over that devastating recollection.

I believe the depression and dejection that my children suffer can be transformed by that same loving balm. How so? I can revisit painful times in my past with healing grace, and I can teach this technique to my family.

I can help my son go back to the moment when he was perched on an examination table and being read a litany of horrible symptoms caused by this strange disease. In his imagination, he can reposition himself in that exact spot, shivering in his boxers, being scrutinized as an anomaly, and wondering if he will ever wrestle, play football, or live a normal life. We can reminisce about that dreadful afternoon — allowing ourselves to experience the sights, sounds, and emotions of that time. We can permit ourselves to grieve the awful news all over again. Then, we can go a step further and speak to that version of ourselves that was traumatically affected. We can offer hope, acceptance, and grace.

If you’re living with Fabry disease, what would you say to yourself the day you were diagnosed? Can you give yourself permission to feel the heartbreak again, and then speak hope to that distraught individual sitting in a doctor’s office?

Today, as you fight the exhausting battle for mental peace, know that you are not alone.

Note: Fabry Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Fabry Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Fabry disease.