Navigating School Life with Lupus

As a parent of a child diagnosed with Lupus, how do you prepare your child for school when they have a chronic illness? How do you teach your child to have a voice at such an early age? How do you protect them?

These are all thoughts that have traveled through my head since learning Miah, my daughter has Lupus. After my daughter’s diagnosis, I knew that I needed to learn as much as possible, especially since I had absolutely zero knowledge about Lupus. I spent so many days, afternoons and nights looking through different Lupus related websites. One morning I found something called a 504 Plan. This was where things got interesting! A 504 plan is an education plan that provides accommodations and modifications for a student with a medical condition and/or physical disability. The plan is designed for their academic success and delivers access to a learning environment which is then tailored to a child’s individual needs.

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Lupus and Employment

When you're first diagnosed with lupus, so many things run through your mind. On top of all the overwhelming shock, there is the question “Will I be able to do the same things I've always done?”. You convince yourself that nothing changes and you can still live the same life you've always known. As much as you try, you can't help but notice the small changes in your life. Physically, mentally, and emotionally, little pieces of you begin to change. You make minor adjustments, but still, carry on as if nothing happened. You work, go to school, spend time with friends. You live. Afterall, you don't look sick, so you try not to be...sick. And then, smack! You hit a wall and one day you just...can't.

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How The Doctor-Patient Partnership Affects Treatment Adherence

Treatment adherence is crucial to getting better. I know from personal experience that when I deviate from my treatment plan (whether it's because of forgetfulness or carelessness), my health suffers. It’s essential for me, the patient, to do my part in managing my health. Ideally, it would go like this: the doctor uses his/her knowledge to diagnose and determine the best course of treatment, the patient takes said treatment. It often isn’t that simple though for a variety of reasons, like difficulty getting a diagnosis, then difficulty finding the correct treatment plan that works for that specific patient. Another issue that can arise once a treatment plan has been prescribed is adherence to treatment. Adherence (or compliance) means taking the treatment as told, on time, for the specified duration, and not missing a single dose. A 2006 study published in the Journal of American Medical Association concluded that that the average compliance for long-term treatment plans was only about 50%.

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