RHODE ISLAND -- Imagine feeling terrible, but not knowing what is wrong.
That happened to two Rhode Island women who are now helping others to find answers and get their lives back.
Susan Branch and Betty Gordon have known each other for about four months. They met because they shared a disease called immune deficiency.
Immune deficiency prevents them from being able to ward off infections like folks with a healthy immune system.
For Susan, it has been going on for years.
"I've had chronic ear problems from the time I was very young. Bronchitis, sinusitis, sinus infections, sinus surgeries, I went through. And then in the last few years it's been pneumonia -- the past two winters really, really bad," said Susan.
In addition to the chronic infections, Susan and Betty were always tired.
"Tired all the time, I can show you a picture where here I had sunken cheeks, you know I look ridiculous and yet doctors are telling me that I'm fine, and I wasn't fine," said Betty.
It took years for both women to get a diagnosis.
"It's very misunderstood, very, very misunderstood, people you know say you know, yeah you look great," said Susan.
A blood test confirmed both Susan and Betty had an immune deficiency disease. Knowing that led to a treatment that keeps them going.
They get intravenous therapy with plasma blood products every three to four weeks, for three to four hours.
"Night and day, you know you still don't feel like totally, I don't think with this disease you ever feel one hundred percent but it certainly makes my life more livable," said Susan.
Susan and Betty are trying to show people this illness does exist, and people should question chronic infections that are difficult to treat with antibiotics, because there are treatments that can make life livable.
To go to the Immune Deficiency Foundation, click here.
Reported by Kristy Ondo