Adjusting to LHON
Losing central vision is scary. Figuring out what to do when it happens is confusing, and there are many issues to address all at once.
This Leber's Hereditary Optic Neuropathy video shares the stories of two people affected by LHON, including the feelings they and their families experienced.
Many rare diseases and blindness onset in early childhood, so in those situations it’s the parents who are in charge of their child’s medical care and all related decisions. LHON can present unique challenges because onset of vision loss most often occurs after childhood.
If the affected individual is an adult, it’s their choice what medical advice to follow and what life choices to make when confronting sudden vision loss. Parents and spouses may feel a natural inclination to step in and provide support when they see their loved one struggling. At the same time the affected person may be striving to maintain their independence, particularly as the sudden vision loss creates a sense of loss of independence. The loved ones of someone affected by LHON may suddenly need to provide support to someone who had previously been independent. These issues of dependence and independence tend to create stress on the person affected by LHON as well as on all family members. Therapeutic support for all may be helpful.
Since LHON is a rare disease, medical professionals and blind support organizations may not be aware of the appropriate care and support needed by those affected by LHON. Educating others and advocating for the needs created by LHON are a constant part of the journey for those affected and their supporters
