Seeing Purpose in Sharing

Sharing Mayo Clinic

Seeing Purpose in Sharing

By
Joel Streed

November 7, 2018

If not for the help and healing Sandra Blue received at Mayo Clinic 10 years ago, she may be blind today. Filled with gratitude, Sandra continues to be moved to share her journey of how her sight was saved from a severe complication of rheumatoid arthritis.

Ten years ago, Sandra Blue came within weeks of losing her vision. The sudden and severe onset of the condition affecting her eyes baffled a number of ophthalmologists. It was only after heeding a friend's suggestion to reach out to Mayo Clinic that Sandra got answers about the condition that was destroying her eyes and was able to halt its progression.

At Mayo Clinic's Florida campus, Sandra learned that the source of her eye problems wasn't actually in her eyes. It was in her immune system. She was diagnosed with rheumatoid arthritis, a chronic autoimmune disorder that occurs when the body's immune system mistakenly attacks healthy tissues. Her vision issues were caused by a disorder called scleritis — a complication that arose as a result of the rheumatoid arthritis.

Since then, thanks to careful monitoring and routine maintenance treatments, what started off feeling like a bad dream has empowered Sandra to form connections and offer support to others like her, who are grappling with vision loss due to scleritis.

"When you lose your sight, it's like nothing else matters. That's your window to life," says Sandra, who enjoys sharing her story to help raise awareness about the condition. "There are patients going through this all over the world. People want to know the latest. They want the closeness."

Unusual journey to understanding

When Sandra first started having eye problems, her symptoms began as streaks of red in the sclera — the white outer tissues of her eyes. Literally overnight, pain set in. Eventually, she learned that the pain was due to out-of-control white blood cells attacking her eyes.

Over the next six months, the pain and redness in Sandra eye's increased as she sought medical advice from eight different ophthalmologists. The pain was intense and relentless.

Sandra was prescribed numerous antibiotic drops and steroid drops to quell the irritation, swelling, redness and pain in her eyes. In addition to eye drops, Sandra was given large doses of oral corticosteroids. Nothing helped. Her eyes continued to redden until all of the white portions had become the color of ketchup. Sandra's ophthalmologist advised her that holes were forming in her eyes and waking up blind was a real possibility for her.

That's when she decided to go to Mayo Clinic. At her appointment, Sandra's medical team, which included an ophthalmologist, ordered a blood test. When the test results came back, Andy Abril, M.D., from the Division of Rheumatology, joined Sandra's care team.

"Interestingly, Sandy had elevated rheumatoid arthritis markers in her blood, even though she had absolutely no joint problems," Dr. Abril says. "Her presentation was atypical in that it is quite unusual to have rheumatoid arthritis just affecting the eyes without any other manifestation. That is what delayed the treatment."

"Her sclera was becoming really thin, and she could have lost her eyesight if we didn't control it."

Andy Abril, M.D.

Dr. Abril prescribed Sandra oral medications known to help manage rheumatoid arthritis, but it did little to improve her debilitating symptoms.

"Her sclera was becoming really thin, and she could have lost her eyesight if we didn't control it," Dr. Abril says. "It was hard for me to tell if it was a matter of weeks or months, but we were really at the point where we were concerned."

Since the oral treatments weren't working, Dr. Abril opted for a more aggressive therapy. At the time, Rituxan was a new biologic drug proving to be effective against the disease. Dr. Abril prescribed Sandra the infusion therapy.

Almost immediately Sandra's symptoms began improving. Administered as an outpatient therapy, the medication, which Sandra continues to receive about every 12 months, has enabled her to live a normal life.

"It's amazing," says Sandra. "If you saw me, you'd say, 'She is God's miracle.'"

Support received and given

Each year, Sandra journeys to Mayo Clinic for her infusion therapy, which she receives over a five- to six-hour period. Through the years, she and Dr. Abril have tweaked the timing to establish the ideal interval between doses.

"It's an ongoing process, and there's still so much I have to be careful of," Sandra says. "If I don't get those treatments in a timely manner, the consequences are threatening. It's almost like a race, and I have to stay in front of it."

In addition to the scleritis in her eyes, a flare-up of rheumatoid arthritis now causes inflammation in Sandra's hand and wrists. But when those flare-ups occur, a dose of the Rituxan quickly eliminates her symptoms. "The Rituxan is magical for me in many ways," she says.

There are side effects to the medication, such as an increased risk for infection. But as long as Sandra's condition responds to the treatment, she can remain on it indefinitely, Dr. Abril says.

"There's no better substitute for rolling up your sleeves and helping someone overcome an experience that you were able to master, especially if you are at risk for losing your sight."

Sandra Blue

If not for the support of her medical team and her family — especially her husband, who helped her though the painful early days of the disease, along with her grandmother and mother, who never stopped praying for her — life would be vastly different, Sandra says.

"Ultimately, God placed me in the palm of his hand and delivered me from what would have been a life-changing experience," Sandra says. "Dr. Abril, in his wisdom, tested me on various medications. My sclera was thinning, and at the last second, he came up with a drug that brought it to an immediate halt."

Sandra says she hopes to continue serving as a support for individuals who can benefit from her experience. Through the years, she's befriended and bonded with fellow patients, including a gentleman in Savannah, Georgia, who was blinded by the disease, and a young woman in Chicago who struggles with chronic eye inflammation. With the empathy and wisdom, Sandra serves as a support and sounding board to others affected by rheumatoid arthritis.

"There's no better substitute for rolling up your sleeves and helping someone overcome an experience that you were able to master, especially if you are at risk for losing your sight," Sandra says.

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