[Masthead] Partly Cloudy ~ 68°F  
High: 68°F ~ Low: 44°F
Friday, Oct. 24, 2014

Down...but not out: Connie Bobo slowed but not stopped by disease

Sunday, April 22, 2012

(Photo)
Connie's not able to spend as much time at the barn as she'd like since her diagnosis.
(Submitted photo)
With the busy lifestyles of today, it's easy to take things for granted. Each day we wake up, go about our business as best we can and hope for a few smiles along the way.

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.

Message to spread

(Photo)
Connie and Bill Bobo at the Celebration.
(Submitted photo)
Connie Bobo has been dealing with a PIDD called Common Variable Immune Deficiency and its side effects for the majority of her life, but was not diagnosed until September 2010. Bobo wishes to share her story as a means to promote awareness of the disease as April is Primary Immunodeficiency Month.

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.

The 'zebras'

"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.

(Photo)
A long-time artist, Bobo now paints in her spare time.
With CVID, frequent and unusual infections involving ears, sinuses, bronchi and lungs may first occur during early childhood and adolescence. In the majority of patients, the diagnosis is not made until much later, after damage to the lungs, lymph nodes and stomach have already taken their toll.

"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."

Symptoms worsen

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.

Infusions help

"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.

(Photo)
Bill is pictured on The Whole Nine Yards, the walking horse he rode to the 2003 World Grand Championship. Here, he and Nine are at Neyland Stadium in Knoxville.
(Submitted photo)
In order for these infusions to be effective, thousands of plasma donors are required. It can take 20,000 or more plasma donors to provide just one IVIg treatment, so you can imagine why treatments are so costly.

"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.

More problems

"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."

Awareness

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.


Comments
Note: The nature of the Internet makes it impractical for our staff to review every comment. If you feel that a comment is offensive, please Login or Create an account first, and then you will be able to flag a comment as objectionable. Please also note that those who post comments on t-g.com may do so using a screen name, which may or may not reflect a website user's actual name. Readers should be careful not to assign comments to real people who may have names similar to screen names. Refrain from obscenity in your comments, and to keep discussions civil, don't say anything in a way your grandmother would be ashamed to read.

I ran across this article and I have the same Immune Difficiency. I would like Bobo to know that there is an organization called the Immune Difficiency Foundation that can be found on the internet. They have so many resources, Doctors that help, financially they help people that need this infusion. Also, I am on Social Security Disability due to the illness and Medicare is now paying for these infusions thanx to the Immune Difficiency Foundation. I wish Bobo all the best.

Sincerely,

Leigh Ann

-- Posted by LaylaDK on Wed, May 2, 2012, at 11:24 PM

I too,along with my mother, have been diagnosed with CVID. Thank you so much for spreading the awareness. I was lucky because my mother was the one who had to endure all the testing and wrong diagnoses before they figured out it was hypogammaglobunemia, now referred to as CVID. My Mother was receiving the infusions but once she retired and her insurance changed we can no longer afford the $10,000 weekly infusions. I myself have not started the infusions because by IGG levels are low but not low enough for the infusions. The doctors have said I will have to start within the next five years, IF my insurance provides adequate coverage. It is one uncomfortable disease. On top of the chronic infections and just not feeling well ever, you have to deal with the fatigue and the sinus and respiritory issues. I would love to wake up, just one day and feel good. I forget how that feels. Or be able to make it through a whole day without using a tissue. Then there are the not so nice side effects- peripheral neuropathy. peeling skin on fingertips, cold sores, boils, thrush, etc. We should just live in a bubble if we could, however that is not an option. So we must keep on keeping on. Just remember you are not alone. Peace, love and happiness!

Christin Bingnear

-- Posted by Christin80 on Fri, Feb 28, 2014, at 9:03 PM


Respond to this story

Posting a comment requires free registration. If you already have an account on this site, enter your username and password below. Otherwise, click here to register.

Username:

Password:  (Forgot your password?)

Your comments:
Please be respectful of others and try to stay on topic.