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Child with "Butterfly Skin" Disease in Pinar del Río Seeks Urgent Help

Wednesday, July 3, 2024 by Isabella Rojas

Child with "Butterfly Skin" Disease in Pinar del Río Seeks Urgent Help
Cuban child - Image by © Facebook/ElMusk Reeve

Relatives of a Cuban child suffering from the disease known as *"butterfly skin"* are urgently seeking help to obtain the necessary medications for the young boy.

The family, residing in Pinar del Río, is requesting immediate assistance for Liam Vento Garriga, a child who will turn two years old on July 19. Liam was born with a chronic genetic condition called Epidermolysis Bullosa, or "butterfly skin," which causes blistering on his skin from minor friction or even the touch of clothing, according to a Facebook post by the profile "ElMusk Reeve".

To keep Liam as healthy as possible, his family explains that stringent hygiene measures are necessary, along with specific medications and supplies to manage his condition and improve his quality of life.

This is a rare disease globally, and in Cuba, only about 27 cases are reported, with Liam being the only one in Pinar del Río province.

The family urgently needs Benadryl suspension, gauzes, dressings, wound care supplies, antibiotic creams, hydrocortisone cream, petroleum jelly, artificial tears, and laxative suspensions. The child lives at Calle Isidro de Armas #329 apto 5, between Coronel Pozo and Callejón García, Pinar del Río, Pinar del Río, Cuba. CP: 20100. Additionally, they have provided a contact number for Verónica Caré Barrios, which is 5339 4209.

Epidermolysis bullosa is a genetic skin disorder that results in blistering, ulcers, internal wounds, and can even cause the esophagus to close. Any contact or friction can cause the skin to detach in those suffering from this condition.

Medication Crisis in Cuba

Amid the ongoing medication crisis on the island, many families turn to social media to seek medicines, especially when children are involved. The Cuban regime acknowledges the shortage of over 200 essential medications, attributing the problem to a lack of raw materials for production.

FAQs on Epidermolysis Bullosa and Medication Shortages in Cuba

Given the severity of Liam's condition and the broader issue of medication shortages in Cuba, here are some frequently asked questions and their answers.

What is Epidermolysis Bullosa?

Epidermolysis Bullosa is a chronic genetic skin disorder that causes the skin to blister and tear from minor friction or trauma. It can also lead to internal wounds and other severe complications.

Why is there a medication shortage in Cuba?

The Cuban government attributes the medication shortage to a lack of raw materials needed for production. This has led to a significant deficit in over 200 essential medications, affecting many families, especially those with chronic and rare conditions like Epidermolysis Bullosa.

How can people help Liam and his family?

People can help by providing the necessary medications and supplies listed by Liam's family, including Benadryl suspension, gauzes, antibiotic creams, and other specific items. Contact Verónica Caré Barrios at 5339 4209 for more information on how to assist.

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