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Her fight against dysautonomia: Erin Robertson’s seven-year struggle with rare disease

Posted on Tuesday, November 25, 2014 at 11:08 am

Erin Robertson

Erin Robertson

In June of 2008 a healthy, athletic, high school freshman girl on the honor roll got sick.

The sickness was not serious. The rare antibodies that the illness produced were.

The antibodies stuck around after they should have. They killed off the mild illness but then attacked part of her nervous system.

This has resulted in a young girl battling Dysautonomia for the last seven years.

The young woman is Erin Robertson, a resident of Warsaw for the entirety of her struggle. She was initially diagnosed with POTS (Postural Orthostatic Tachycardia Syndrome) by Dr. Hasan Abdallah.

POTS, however, was merely a symptom of the larger problem.

“She would pass out and be unresponsive for 30 to 40 minutes while her heart rate was of upwards of 160 beats per minute,” her mother Pam Robertson said. “She would stop breathing for 20 to 30 seconds at a time while unconscious.”

There was a period of time where this was happening from a few times a week to a few times a day. By Thanksgiving of 2008, Erin was homebound.

Erin continued to receive treatments, but was not properly diagnosed with Dysautonomia until after her GI system shut down and she had to have temporary feeding tubes inserted through her nose. The shutting down of her stomach (or gastoparesis) was when things got really bad for Erin. This meant that she would have to have a semi-permanent feeding tube that bypassed her

stomach entirely.

She needed a feeding tube inserted soon, but she begged to have it surgically implanted after senior prom so that she could attend. In November of 2011, the Mayo Clinic officially diagnosed her with Autoimmune Autonomic Neuropathy

Erin has been to University of Virginia, Johns Hopkins and the Mayo Clinic. Since 2011, Erin has spent over 100 days each year in the hospital. While in the hospital the doctors are experimenting with different treatments, surgeries, treating infections, etc.

The toll this has taken on Erin is that she barely has a social life, and her school has to be put on hold for the time being. She has been wheelchair-dependent for two to three out of the last seven years. There was an entire year where she could not eat; she had to rely on intravenous nutrition and feeding tubes.

There has been one treatment that has had some limited success for her.

This is known as IVIG (Intravenously administered immunoglobulin), which is made up of healthy plasma and administered every two to three weeks.

The IVIG caused Aseptic meningitis every time it was administered which lasted two to three days and would be accompanied by splitting headaches and severe sickness.

“They wanted that blood plasma to take over mine and it would basically put me into remission, and it kind of did as I’ve said, but it took a very long time” Erin said.

In June of 2013 she had all of her feeding tubes removed and things were looking up for Erin.

“The treatment did work; it did help. I only had to do it once every three weeks so I could deal with meningitis every three weeks if I had to for being able to eat again.”

She continued IVIG until December of 2013 when, due to repeated infections and blood clots she had to discontinue the treatment.

Erin was better for the next several months, but in June 2014 her symptoms returned quickly.

“I had started to pass out again; I was unable to eat anymore.” She said “I went to the Mayo Clinic in May and they thought I was improving. They said if I got sick again in the next three months I would need to resume IVIG, and I did get sick again. July is when I began this long stretch.”

She had to get the nasal feeding tube reinserted in July of this year. In August, she had the surgery to get the feeding tube directly to her small intestine. But the surgery gave her a serious infection, and her GI tract was pushing the tube out of her small intestine to her stomach, where it did no good. So she was forced to undergo a more serious surgery. This was needed due to the fact that she had endured so many surgeries she had developed adhesions (or things that stick to the abdominal wall).

Erin once again had abdominal surgery; this time, it was open surgery to place the tubes. Her stomach scar looks like that of a man who has had open heart surgery, with a couple of tubes sticking out.

The tubes run to a checkered pink backpack she carries around. One tube goes to her stomach and drains fluid out, and the other runs to her small intestine to insert nutrition and medication. This surgery took place in early September and took about two months for her to recover from.

“The doctor said I can expect for as long as it takes for an average person to heal it’s going to take me twice as long.” Erin said “So for this surgery he said it would take a healthy person about four weeks before they could move normally, stand up straight, things like that. But he was about right it took about eight weeks, and I was in the hospital the whole time.”

There was a dinner and dance benefit for her November 22 in Kinsale that oversold. The proceeds from this benefit will go to help pay her medical bills and to Dysautonomia International.

The Southern Bred band played at the event for no charge, and all of the food was donated.

“I really can’t come up with the words to describe how thankful I am, and how excited I am” she said, her voice breaking. “I finally get to do something that benefits myself, and other patients all over the world, and also it’ll be fun! You know, I get to do something I don’t get to do that often, I don’t get to go out of the house very often.”

One thing that aggravates Erin is when people take her situation lightly because of her healthy, normal and attractive appearance.

“That’s one thing that is very difficult, is having people say things like, ‘But you don’t look sick’ or ‘you’re too young to be this sick.’ Really I’m not, because I am!” she said.

According to Pam, healthy appearance is one of the things that is common with people who have Dysautonomia.

Erin said her perspective change is the reason why, if she could go back and have it another way, she wouldn’t.

“Some of the people in my life who are most important to me are there because we have the exact same problems, and we would never have met otherwise.” She said “And being able to relate with someone on that level is vital to my mental health.”

She said this areas small and close-knit way of life has been very positive for her. “I don’t think I would have gotten this kind of support from a big community, like living in the city, this is such a supportive community. I appreciate it so much; I’ve gotten cards in the mail when I was in the hospital from people I have never met.” Erin continued, “They remind you, you have a reason to fight this. They remind you why you’re doing it, and why it’s not so bad.”