Tyler is an active college student majoring in mechanical engineering, with a minor in sports engineering. His real passion is auto racing and he loves math and science.
"I decided to do engineering mainly because I love sciences. I love working with numbers and math. I like solving problems and building things," he says.
"I try not to let my disease interfere with my daily life. I try to live as normal a life as I can and do the things that people my age like to do. I might not be the all-star quarterback on the college football team, but that's fine with me. I can excel in other areas and do different things."
"I was about 12 years old when I found out I had MPS VI . It began with the curvature of my spine, which turned out to be scoliosis. A year later, I went back to my doctor who found another problem—a leak in my heart and a heart murmur. Every year it seemed like I was having new problems. Finally, my doctor sent me to a genetic specialist at the local children's hospital who ran a blood test and took a biopsy of my skin. When she told us the diagnosis—MPS VI--we were left a little frightened as a family because MPS is not something that you hear about—it's not a common disease. First we considered bone marrow transplant, but that was not a good option for me."
"I was 18 when I started Naglazyme. The doctors were not sure how it was going to improve me. They said it would bring my GAG levels down, and I understood that, but they said as far as reversing some of the effects of MPS VI, they weren't sure to what degree that would be."
Today, Tyler has increased range-of-motion, he walks, jogs, and can work comfortably on his computer. *
"Before Naglazyme, I woke up and I would have stiff joints in my hands and knees and my range of motion wasn't great."
Tyler receives weekly in-home infusions of Naglazyme.
"I've been on the therapy about two years now. Although I don't know the exact number of the GAG I had before I started Naglazyme, the number was very high. And throughout the past two years the doctors and I have noticed a decrease in those levels, which means that the drug is working for me!
"What makes it worth it is knowing in the back of my mind that I am slowing the progression of my disease. Going on Naglazyme, and slowing the progression, or may be even stopping it, will help me lead a longer life; a more healthy and enjoyable life," he concludes.
"I don't like to wake up and feel burdened by this disorder. I try to overcome it with Naglazyme and live my life to the fullest. Every day."
* Individual patient response to Naglazyme® treatment will vary.
Full Indication and Important Safety Information
Naglazyme® (galsulfase) is indicated for patients with mucopolysaccharidosis VI (MPS VI). Naglazyme has been shown to improve walking and stair-climbing capacity.
Important Safety Information
The most common adverse events in patients treated with Naglazyme were headache, fever, joint pain, vomiting, upper respiratory infections, abdominal pain, diarrhea, ear pain, cough, and ear infections. Severe reactions included swollen blood vessels, low blood pressure, difficulty breathing, respiratory distress, stopping breathing, and hives.
The most common symptoms of infusion reactions included fever, chills/shakes, headache, rash, and mild to moderate hives. Nausea, vomiting, elevated blood pressure, chest pain, abdominal pain, malaise, and joint pain were also reported.
No patients discontinued Naglazyme treatment because of reactions. Nearly all patients developed antibodies as a result of the treatment, but the level of immune response did not correlate with the severity of the adverse reaction.
Because antihistamine use may increase the risk of stopping breathing, airways should be checked to ensure they are not blocked or obstructed. Treatment may be delayed if you have a fever or respiratory illness..
To report SUSPECTED ADVERSE REACTIONS, contact BioMarin Pharmaceutical Inc. at 1-866-906-6100, or FDA at 1-800-FDA-1088 or www.fda.gov/medwatch.
Naglazyme is available by prescription only. To learn more, please visit www.naglazyme.com for full prescribing information. If you have any questions about this information, please talk with your doctor.