EL PASO – The bulky machine beside the young woman beeps in cadence with her heartbeat as a large IV bag pumps fluids into her body via the needle in her vein on her upper hand. The nurse comes into the room to check her vitals and remind the family of visiting hours.
“You know I can’t even count the number of times I have been in and out of the hospital anymore,” said Amanda Marie Cordero, a 23 year old woman suffering from a “flair up” of Vasculitis, an auto immune disorder.
According to the non-profit Vasculitis Foundation, the illness is a “condition that involves inflammation in the blood vessels.” It is an autoimmune disorder in which the body’s immune system begins to attack its own blood vessels. The exact causes of Vasculitis are unknown but can be attributed to numerous causes such as infection, medication or can be brought on by another condition or disease.
Cordero has lived with two forms of the disease called Granulomatosis with Polyangiitis, once referred to as Wegener’s, a form of Vasculitis, for about two and a half years, and is now almost six months pregnant, expecting a boy in August. This came as a surprise to her, due to the fact that she was told by several of her doctors that she could not get pregnant due to her condition.
“When they told me I could not have children it was devastating; that was something that I always wanted… to have my own little family. People always talk about their dreams, and that crushed all of mine,” said Cordero.
Vasculitis is a condition that is “more common than you think, but more serious than you know,” according to Joyce A. Kullman, the Executive Director of the Vasculitis Foundation. Kullman said that statistics on Vasculitis are very difficult to determine due to the rarity of these diseases.
“There are over 15 different types of Vasculitis. Some forms of the disease affect children, some affect people of all ages while others affect people over the age of 70,” said Kullman.
Cordero has been in and out of the hospital several times throughout her diagnosis, but it took her doctors a very long time to determine what exactly was wrong with her. It began with her having bad pains in her kidneys and led to a trip to the emergency room which lasted two weeks. “My kidneys started failing and my urine started to turn black,” said Cordero.
She began her dialysis treatment at the hospital and that is when she began to break down emotionally and psychologically. Her trips to the hospital began as monthly visits and then turned into a trip once every three to four months.
Cordero said “I would go to the hospital because of a flair up which is when your joints become very contracted so I would just be there for a day, sometimes a couple of hours, sometimes I was there for two or three days.”
The “flair ups” are defined by the Vasculitis foundation as “inflammations” which refer to the body’s response to injury, and injury to the blood vessels. This involves “pain, redness, warmth, swelling and loss of function in the affected tissues.”
During her time in the hospital she began her chemotherapy treatments, dialysis, and had a plasma exchange, kidney biopsy, and at one point a blood transfusion. This is what led to doctors explaining to Cordero that pregnancy was not possible.
Cordero went through 10 doctors during her run in and out of the hospital and saw three different specialists later. Now she is currently seeing one doctor for her condition and two doctors for her high-risk pregnancy, a general OBGYN, and a specialist.
All these treatments have cost more than $80,000 she said and she has managed to cover the costs through insurance and savings.
“I go to the doctor for Vasculitis once a month where I give blood and urine and they check for the protein amount in my urine, and how my kidneys are functioning. I go to the doctor for my pregnancy two to three times a month where they do an ultrasound every time and take my urine,” said Cordero.
Austin Farmer was diagnosed with the Granulomatosis with Polyangiitis form of Vasculitis at the age of 13. Upon his diagnosis, his mother, Dede Farmer, tried to gather information on the condition and discovered that there was no support system in El Paso other than what physicians provided.
“That was my goal, I was on a mission to find out what this is, why it happened to him and what we can do as a family to help him get better,” said Dede Farmer.
She contacted the Vasculitis Foundation and was told that there was no one in the El Paso area who either had Vasculitis or could provide assistance and information on the condition. Farmer was instructed to contact the nearest chapter based out of Albuquerque, NM for assistance, where she received the information she had been seeking. She returned to El Paso and through a connection at her church got the El Paso Times to run a story during Vasculitis Awareness month, which takes place in May.
“After the story ran about this rare disease that apparently no one in El Paso had, I received emails from about six people who all wanted to tell me that they had it too, or someone they knew, or had it and don’t have it anymore,” said Farmer.
This outreach led to Farmer creating a local chapter for Vasculitis in El Paso, with a support group to help provide information and resources to those who have been diagnosed as well as their families. Farmer said that their chapter’s goal is to create awareness about this condition, and provide support to those who have been diagnosed.
Cordero attends the support meetings with her husband and other family members. “This condition is very serious, very common, and it affects a lot of people and their families. You have to be supportive, it gets very tough and some people don’t have family to support them, so that is why this support group is so important in El Paso,” said Cordero.
Cordero is afraid that her condition will cause her to deliver before her expected due date and that the newborn may have to remain in the hospital for an extended period of time, but looks forward to being a mother.
“It’s the one thing that I have always wanted and they almost took it away but now I have my opportunity and I look forward to living my life how I have always dreamed,” said Cordero.