Donations Help EB Patients

Epidermolysis bullosa (EB) patients registered at the specialized health house for the group (EB House) received a total of 24 billion rials ($640,000) in donations during the last fiscal year that ended in March.

The number of patients who received financial assistance reached 533 during the period, each receiving about 57 million rials ($1,520), IRNA reported.

According to Seyyed Hamid Reza Hashemi Golpayegani, the head of EB group at the Rare Disease Foundation (RADOIR), the total amount came from individual philanthropists.

Also, in a plan titled “Tree of Wishes”, EB patients who mostly comprise children, wrote a letter to the EB house about their wishes.

“Many of their wishes were fulfilled with 800 million rials ($21,000) in donations,” Golpayegani said.  

Besides the financial aid, over 5,000 packages of special bandage worth 26.5 billion rials ($700,000) were sent to the patients’ homes on a monthly basis by Iran University of Medical Sciences and Iran’s Food and Drug Organization.

EB patients have to use special bandages that are very expensive. A 15 by 15 cm sheet can cost up to 2.5 million rials ($66) and, depending on the size of the wound, at least three or four gauzes are needed every time the dressing needs change.

Last year, 240 patients were referred to hospitals covered by the university to receive free medical care, 40 of which underwent surgery free of charge.

“Unfortunately, 24 patients lost their lives last year,” said Golpayegani.  Epidermolysis bullosa (EB) is a group of inherited connective tissue diseases that cause blisters on the skin and mucosal membranes. The prevalence was estimated to be approximately 8 per million and the incidence 19 per million live births. It is a result of a defect in anchoring between the epidermis and dermis, resulting in friction and skin fragility. It is not an infection or contagious and is not due to allergy. The severity ranges from mild to lethal.

It is estimated that there are between 800 and 1,000 EB patients in the country of which, 598 have registered at the EB house.

‘Butterfly Children’ is a term often used to describe younger patients (because the skin is said to be as fragile as a butterfly’s wings), along with ‘Cotton Wool Babies’, or (in South America) ‘Crystal Skin Children’.

Opened in June 2015 under the auspices of the Tehran-based Iran University of Medical Sciences, the specialized EB health house is equipped to provide patients with free medical services including continuous supply of the costly special dressing materials and medicine, as well as diagnosis, control and prognosis by specialists.

However, the center’s two-year contract with the university ended in March, leaving EB house with no specialists to review patients’ files and decide whether they can be registered at the house.

“There are now 120 people on the waiting list to register at the house and no experts to assess their conditions,” Golpayegani said.

He expressed hope that the house will soon sign a new contract with another medical school to be able to resume the EB services.