For most folks, worrying about illness and infection is a seasonal thing that might reserve a place in the back of your mind. For those affected by primary immunodeficiency disorders (PIDD), however, this is a daily concern that cannot be taken lightly.
Many in the community know Bobo as a prominent and active figure in the Tennessee Walking Horse industry, and the news of her illness is surprising. Bobo is not one to use her condition as a crutch, but like many others suffering from CVID, feels compelled to inform others -- especially parents -- about immune deficiency disorders.
PIDDs are a group of genetic diseases in which the immune system's ability to fight off infection is greatly reduced or absent. These problems lead to an increased susceptibility to infections. There are more than 150 different types of PIDD and some 250,000 people are diagnosed with them in the United States.
About one in 25,000 to 50,000 people suffer from CVID like Bobo, according to a report published on the Journal of the American Society of Hematology website.
"There are so many doctors that don't even know what CVID is," Bobo explained. "People with CVID are called zebras because doctors are taught in medical school, if it looks like a horse and sounds like a horse then that's what it is. Because it is such a rare disease, some doctors may not find it because the symptoms mimic other diseases. We're the exception -- the zebras."
With proper treatment and early intervention, a patient can live a full and nearly normal life. However, if the patient doesn't get diagnosed until later in life, the chances that they will die from infection or lung damage are greatly increased.
"I remember being sick virtually all of my childhood," Bobo said. "I had asthma, and was always bothered by ear infections, lung infections, colds and serious pneumonia."
In 2010, Bobo noticed feeling extreme fatigue, more pain than usual, and increasingly frequent infections. Then her voice became hoarse while she dealt with chronic bronchitis. At this point, she visited a pulmonologist.
"I was lying on the doctor's table, so sick that I felt like I was dying," Bobo recalled. "He checked my immunoglobulin (antibodies) level, and found that it was well below normal."
After confirming her diagnosis by finding low levels of serum immunoglobulins, Bobo's pulmonologist directed her to different specialist physicians. An oncologist and hematologist at St. Thomas Hospital was able to find the answer to keeping her healthy, for the most part.
The answer for those struggling with CVID is to undergo immunoglobulin replacement therapy (IVIg). IVIg therapy, albeit very expensive, has greatly improved the outlook of patients with CVID. The aim of the treatment is to keep the patient free of infections and to prevent the development of chronic lung disease.
"My [IVIg] infusions have helped, but I still get infections," said Bobo. "I have to be very careful on a daily basis -- I go through a lot of hand sanitizer. If I'm feeling very well, I may venture out once or twice a month. But, I get sick every time."
"My husband told me he was going to take my keys away," laughed Bobo.
"One of the things that people think about this disease is that we'll get better," Bobo said. "But in reality, it's just something that we'll have to deal with the rest of our lives."
The best hope for the IVIg treatments is to keep Bobo comfortable and infection free. This should also help to keep her from developing additional illnesses that come along with CVID. Lymphoma, stomach cancer and chronic lung disease are all serious consequences of CVID.
"It has lots of horrible side effects," Bobo added. "I've developed Sjogren's Syndrome which has dried out my eyes, mouth, lips and skin. I'll lose teeth because of my saliva glands being dried out."
Bobo and others going through CVID have banded together online, though. Bobo is an active member of three online support groups which have helped her immensely. Through them, she is able to connect with people going through the same things from places like Scotland, Australia, Africa and Iceland.
"It's opened a new world to me in learning about my disease," explained Bobo. "There are people who have dealt with these symptoms for 30 years. Even I can coach someone who has just been diagnosed. It's absolutely wonderful to know that I have that many friends who know what I'm going through."
The main thing that Bobo wanted to communicate to people was to be aware of this disease, especially parents.
"If you have a child that is sick all the time and see characteristics of a PIDD, have them do a blood test to check immunoglobulin levels," Bobo urged. "The sooner it's detected, the better."
To help Bobo get some relief from medical expenses, friends have organized a benefit dinner to take place on Wednesday, May 23 at the Champions Arena on the Celebration grounds. A barbeque dinner will be prepared by Jerry Summers and Mikey Graves with a live auction to follow. If you would like to donate an item or 2 for the auction call Julie Lambert (931) 619-7989.