← Back to news
NewsRSSWednesday, April 22, 2026 · 2 days ago

Why I Want My Tracheostomy Removed

WHY IT MATTERS

For LGMD patients managing respiratory complications, this firsthand account addresses a critical quality-of-life decision about whether a tracheostomy can be safely removed as the patient's condition changes.

A patient with LGMD (a rare muscle disease) received a tracheostomy — a breathing tube in the neck — years ago after a serious infection. Now they're wondering if it's time to have it removed. This personal story explores what it takes to reverse this medical decision.

Years ago, I went to the hospital with an infection complicated by LGMD and left with a tracheostomy. Is it finally time for it to come out? The post Why I Want My Tracheostomy Removed appeared first on Rare Disease Advisor

ASK YOUR DOCTOR

If you have a tracheostomy related to LGMD or another neuromuscular condition, discuss with your pulmonologist and neurologist whether removal is medically feasible based on your current respiratory function.

Find a specialist →Learn more ↗
tracheostomylgmdrespiratory carequality of lifepatient perspective

Related conditions

Limb-girdle muscular dystrophy