20-Year-Old Shares Struggles of LHON Diagnosis

For five years, 20-year-old Christopher Backlund lived with his grandfather, with whom he had a strong and meaningful bond. Unfortunately, Christopher’s grandfather, Mitchell, passed away in Februay 2021. As Christopher underwent the grieving process, he had no idea that some additional struggles were coming his way. According to Patch, Christopher was diagnosed with Leber hereditary optic neuropathy (LHON) in July 2022; within just a month, his mother passed away from renal failure.

Christopher’s Story

Despite these challenges, Christopher remains resilient. He is moving forward with as much strength and positivity he can muster. Given his LHON diagnosis, he isn’t sure what the future will bring. His mother also had LHON. Watching her, and experiencing this journey through her, has shown Christopher what to expect. Additionally, his doctors mentioned that he will most likely be blind within the next six months.

He began noticing potential LHON symptoms towards the end of 2021. Christopher’s vision was worsening – mostly in his right eye – until the point that he had almost completely lost vision in that eye. After a trip to the emergency room, and some additional testing, he finally reached a diagnosis. Right now, Christopher is hoping to pursue some experimental treatment options, although he has not yet been given approval to pursue these treatments. However, with the help of advocates and a legal team, he hopes that he will be able to gain access to treatment.

In the meantime, Christopher is trying to live life to his fullest. While he can no longer take flight lessons (one of his passions), he hopes that he would be able to fly with a pilot and just observe. Christopher could also see himself pursuing a political career, possibly one in the local area. After all, his family has deep historical ties to where he lives. Depending on his vision, Christopher could run for Southampton Town trustee in 2023, although he isn’t sure yet. And finally, he spends a lot of time just talking with and bonding with his dad and his sister, grateful to still have them.

The future may still be unknown, but Christopher is looking to it with hope. He explains:

“Sometimes people say my story is tragic, but I don’t think that way.”

What is Leber Hereditary Optic Neuropathy (LHON)?

Leber hereditary optic neuropathy (LHON) is a mitochondrially inherited form of vision loss which affects both eyes. Typically, those with LHON first lose sight in one eye, when vision loss and failure in the other eye comes later. As described above, Christopher first lost his vision in his right eye. An estimated 1 in every 50,000 people has LHON. Males are 4-5x more likely to have this condition than females. Symptoms often appear in young adulthood, with vision loss occuring before age 40. These symptoms can include:

  • Loss of central vision
  • Blurred vision
  • Reduced color perception
  • Peripheral neuropathy (in rare cases)
  • Postural tremor (in rare cases)
  • Movement disorders (in rare cases)
  • Nonspecific myopathy (in rare cases)
Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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