Living life with a chronic disease – tackling my Multiple Sclerosis

Posted January 2, 2014 at 11:11 am

 

An ever-growing popular concept in personal healthcare is the idea of the empowered patient (also known as being an advocate for your health). This term can mean different things to different people, but the general concept is that an individual makes well-informed health decisions based on research and conversations with their physician. One person who has applied this concept to her own personal health is Florida-native, Leslie Cunningham.

In January 2012, at just 26-years old, Leslie was diagnosed with a chronic disease called relapsing multiple sclerosis (MS). For almost a year, she experienced some of the common symptoms many people living with MS experience, including extreme fatigue and numbness and tingling in her spine, hands and feet. According to the National MS Society, MS involves an immune system attack against the central nervous system which is made up of the brain, spinal cord and the optic nerves. MS occurs when the body’s immune cells get confused and attack the protective coating that surrounds the nerve fibers in the central nervous system (called myelin). When this coating protecting the nerves is attacked, it causes disruptions in transmissions from the brain to the body which can result in many different physical and cognitive problems. MS is thought to affect more than 2.1 million people worldwide.

“One of the first challenges I had to overcome was learning to accept the fact that I was now living with a chronic disease and that some things about my life were going to change. MS can be really scary and it was hard for me not to jump to the worst case scenario when thinking about my future, which I did from time to time. The way I overcame this fear was through research and talking to other people.”

Leslie was determined to not let MS get her down and to continue living her life. After much research and weighing the pros and cons of different therapies, Leslie found the right one for her. “I knew it would take a lot of inner strength, personal research and a lot of direct conversations with my doctor. The first step I took was having an open conversation with my doctor about how to treat what is a lifelong condition. I read a lot of newspaper articles, health columns, research and online forums. Of course, at times some of the information was over my head, but in the end, it really helped me have a productive conversation about the benefits and potential risks of therapy with my doctors. Thanks to those conversations, I was put on an oral MS treatment option called AUBAGIO┬« (teriflunomide).”

Using the tools of an empowered patient, Leslie was able to better understand her disease and help change the way she was treating her condition. Leslie has become an advocate for herself and others, helping to raise awareness and money for MS by participating in her local Walk MS event benefitting the National MS Society and participating in a variety of patient events.

Leslie’s advice to anyone looking to be an empowered patient but does not know how to take the next step: “Speak up! Be your own advocate. Everyone always tells you this, but if something is bothering you, talk to your doctor. Even if it is an embarrassing problem or it seems silly – most doctors have heard it all and they can help. My diagnosis started as a slight tingle in my spine when picking a pen up off the floor. It could have been nothing and it turned out to be something. Everyone should talk to their healthcare provider about what is best for them since what works for one patient may not work for another.” Those interested in learning more about AUBAGIO or MS can visit AUBAGIO.com.

AUBAGIO® (teriflunomide), manufactured by Genzyme Corporation, is a prescription medicine used to treat relapsing forms of multiple sclerosis (MS).

Leslie is an MS One to OneTM Ambassador. MS One to OneTM Ambassadors are sponsored by Genzyme and participate in speaking events and other opportunities.

Important safety information

Do not take AUBAGIO if you have severe liver problems. AUBAGIO may cause serious liver problems, which can be life-threatening. Your risk may be higher if you take other medicines that affect your liver. Your doctor should do blood tests to check your liver within 6 months before you start taking AUBAGIO and once a month for 6 months after you start taking AUBAGIO.

Tell your doctor right away if you develop any of these symptoms of liver problems: nausea, vomiting, stomach pain, loss of appetite, tiredness, yellowing of your skin or whites of your eyes, or dark urine.

Do not take AUBAGIO if you take a medicine called leflunomide.

AUBAGIO may harm your unborn baby. Do not take AUBAGIO if you are pregnant or are of childbearing age and not using effective birth control. You should have a pregnancy test before you start taking AUBAGIO. After stopping AUBAGIO, continue using effective birth control until you have tests to make sure your blood levels of AUBAGIO are low enough. If you become pregnant while taking AUBAGIO or within 2 years after you stop taking it, tell your doctor right away and enroll in the AUBAGIO Pregnancy Registry at 1-800-745-4447, option 2, which collects health information about you and your baby.

If you are a man taking AUBAGIO whose partner plans to become pregnant, you should stop taking AUBAGIO and talk with your doctor about reducing the levels of AUBAGIO in your blood quickly. If your partner does not plan to become pregnant, use effective birth control while taking AUBAGIO.

AUBAGIO may stay in your blood for up to 2 years after you stop taking it. Your doctor can prescribe a medicine that can help remove AUBAGIO from your body quickly.

Before taking AUBAGIO, talk with your doctor if you have

* Liver or kidney problems

* A fever or infection, or if you are unable to fight infections

* Numbness or tingling in your hands or feet that is different from your MS symptoms

* Diabetes

* Serious skin problems when taking other medicines

* Breathing problems

* High blood pressure

It is not known if AUBAGIO passes into breast milk. Talk with your doctor to decide if you should take AUBAGIO or should breastfeed-you should not do both at the same time. Also talk with your doctor if you take or are planning to take other medicines (especially medicines for treating cancer or controlling your immune system) or if you take or are planning to take vitamins or herbal supplements.

Before starting AUBAGIO, your doctor should check your white blood cell count and perform a tuberculosis skin test.

You should not receive certain vaccinations during and for 6 months after treatment with AUBAGIO.

AUBAGIO may cause serious side effects, including

* Reduced white blood cell count. This may cause you to have more infections

* Numbness or tingling in your hands or feet that is different from your MS symptoms

* Kidney problems

* High potassium levels in your blood

* Serious skin problems

* Breathing problems (new or worsening)

* High blood pressure

The most common side effects of AUBAGIO include

* Abnormal liver test results

* Hair thinning or loss

* Diarrhea

* Flu

* Upset stomach

* Burning or prickling feeling in your skin

These are not all the side effects of AUBAGIO. Tell your doctor about any side effect that bothers you or that does not go away. For more information, ask your doctor or pharmacist.

For full prescribing information with medication guide and more information about AUBAGIO, please visit www.aubagio.com.

You are encouraged to report side effects of prescription drugs to the FDA. Visit www.fda.gov/medwatch or call 1-800-FDA-1088.

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Leslie Cunningham, 27, was diagnosed with multiple sclerosis and is part of the MS One to One Ambassador program, sponsored by Genzyme, to share her experience and encourage others to be their own health advocate. www.MSOnetoOne.com.