Jessica Liliana Ramirez suffers from a rare disease that makes her skin blister like it’s been scalded by hot water. She can’t stand her clothes against her or physical contact. Her skin falls off and it hurts a great deal. On top of the physical pain, she faces rejection because of her condition.
Ramirez, 23, was diagnosed with Epidermolysis bullosa, a rare skin disease also known as ‘crystal skin’ or ‘butterfly skin.’
And now she has won a case that orders the Colombian government to help her get the specialist care she needs.
The disease makes her skin excessively fragile, and it also falls off too easily. It is incurable and affects 1 in 2,000 people, according to a report released by the nonprofit United for Justice group, which filed her lawsuit with the Inter-American Commission on Human Rights (IACHR), asking that her rights to life and her integrity to be respected.
On November 4, the IACHR granted precautionary measures to Ramirez, saying her rights are “in a situation of risk, as a consequence of her health”; and the Colombian state must “adopt the necessary measures in order to preserve her life through proper medical treatment.”
“The IACHR asks Colombia to adopt the necessary measures in order to preserve the life and personal integrity of the beneficiary, considering the specific aspects of the disease that she faces, with the purpose of ensuring that she has access to proper medical treatment, according to the technical guidances of the Pan-American Health Organization and other international standards that may be applicable”, the organization states in its ruling.
CNN’s attempts to reach the Health Ministry of Colombia for comments regarding this case were unsuccessful.
Victim of rejection
Ramirez told CNN Espanol that the precautionary measure means access to comprehensive treatment including access to specialists and medicine to alleviate her pain.
She needs to wear a special gauze to protect her skin, which is difficult to find in Colombia. Without it, she uses regular gauze which, she says, is inadequate.
“I used to suffer a lot, because the gauze would stick to my skin, and when I took it off, I felt a lot of pain,” she says from her home in Bogota, where she spends her days.
Due to her condition, she prefers to stay indoors in order to avoid physical contact. Ramirez studied at an elementary school in the city, and she attended high school through distance learning.
“When I don’t have money for a taxi, we have to take the bus. It is complicated for me, because people hurt me through physical contact. I can’t remain steady on the bus and I can fall off very easily. People are disrespectful,” says Jessica, adding that often she feels rejected.
“There was a time when a guy I didn’t know started to send me messages that wished for my death; he said that I was gross and that it was a pity that I was alive. Surely, you feel bad because it is really hurtful,” Ramirez said.
Margarita Rey, one of the United for Justice attorneys who took on the case, explained that in 2006 a Colombian judge had already protected Ramirez’s right to health and integrity through a remedy sentence; however, the care never came.
Rey says this new decision is an important precedent because other patients that suffer from this disease might benefit from it, not just in Colombia, but throughout the region.
“What this precautionary measure does is… give patients visibility. A disadvantage that rare disease patients face is that they are ignored, because in many cases, their diseases are unaccounted for,” she told CNN.
Fecoder, the Colombian Federation of Rare Diseases, which specializes in cases like Ramirez’s, also celebrated the decision and called it “pivotal.”
“The international decision that was adopted is pivotal, not just for Jessica, but for all patients that suffer from rare diseases in Colombia and in Latin America, setting forth a road of hope when the remedy proves to be ineffective,” Fecoder wrote in a statement.
Fecoder said the disease is not contagious but those with it “are destined to live a life of constant pain”.
Fecoder added that the condition’s rarity also made it difficult for doctors correctly make the diagnosis.
Ramirez says she hopes the ruling will mean she can finally get quality care. She also wants to learn English and do some international travel.