health
Child with rare disease goes six months without vital medication
Juan Sebastián, a child just 6 years old, faces a critical situation: his life depends on medication he has not received for more than six months.
TL;DR
- Juan Sebastián, a 6-year-old boy, suffers from nephropathic cystinosis, a rare disease impacting his kidneys and eyes.
- He has not received his vital medications, cysteamine capsules and Cystadrops eye drops, for over six months from EPS Famisanar.
- The lack of medication has led to ocular redness and the risk of his condition worsening to the point of needing dialysis.
- Nephropathic cystinosis is a rare disease with only 25 reported cases in Colombia, posing challenges for specialized treatment access.
- His family is urgently requesting the delivery of his medication to prevent further health deterioration.