Rare Diseases An Extended Guide

Creating awareness among Indian women.

- Himangi Mathur

According to the European Organisation for Rare Diseases (EURORDIS), nearly 25 per cent of patients with unique disorders have to wait for 5 to 30 years for a proper diagnosis. The report also said around 40 per cent of them have received an incorrect diagnosis.

The NORD (National Organisation for Rare Diseases) report also said that the delay in the diagnosis of rare diseases leads to life-threatening and irreversible consequences. They can include severe psychological distress for the patients and their families, degeneration of their clinical status and even death.

Asherman's Syndrome

When scarred tissues build up inside a female's uterus it causes a condition called Asherman's Syndrome. In simple words, these extra tissues build up on the walls of the uterus and leave the uterus with less space.

It is a very rare disease and at times goes unnoticed, if the patient doesn't experience any symptoms. However, it is not a genetic disease and can be acquired after a uterus surgery like D&C or C-Section delivery or cancer treatments.

Also, women who get Intrauterine Device (IUD) planted in their uterus for long-term birth control are also at a risk of this disease as when a device is placed in your body, there is always a risk of infection.

Asherman's Disease is usually diagnosed when a female experiences light or no periods, pelvic pain, abnormal bleeding or faces difficulty in getting pregnant. An ultrasound, hysteroscopy or a saline infusion sonography can diagnose this disease.

Your healthcare provider will choose the most appropriate way to go after discussing your condition with you.