College Students with Multiple Sclerosis (MS)

A Guide to Campus Resources & Support

More than 2.3 million people in the world have multiple sclerosis, many of them college students. Symptoms such as pain, fatigue and difficulty walking can make the traditional college experience challenging. Fortunately, there are many resources on campus and beyond that can help. This guide provides tips for managing MS symptoms while in college, plus information on scholarships and helpful resources.

Multiple Sclerosis 101

Multiple sclerosis occurs when immune cells work against the parts that make up the central nervous system: the brain, spinal cord and optic nerves. According to the National MS Society, MS is unpredictable, interrupting the flow of information “within the brain, and between the brain and body.”

How MS Symptoms Can Affect College Students

College students with MS must deal with a range of symptoms, many of which can have a direct impact on their school performance. “Like many autoimmune challenges, the impact on day to day life is unique to that person,” says Amelia Roberts, a healthcare coordinator who often works with college students with autoimmune challenges.

“Some may have trouble walking long distances. Stairs may be a challenge. Getting to regular treatment and follow ups may be a challenge as well.” But, she adds, “proper planning can help to limit the impact of these challenges.”

Asking for accommodation is usually the first step. “You can get letters that request a variety of accommodations,” says Roberts. “Start the process at your school’s health clinic, Student Life or Disability Office, gathering needed accommodation forms. When in doubt, reach back to your specialty provider office and ask for help. We pride ourselves on supporting students and their families through this transition.”

Once you’ve connected with your school about reasonable accommodation, here are some additional tips to help manage MS symptoms and lessen the impact on your college experience.

  • Fatigue

    Approximately 80 percent of people with MS have fatigue, making it the most common symptom. MS fatigue is different from the fatigue people experience when they haven’t gotten enough sleep or are feeling stressed. Instead, MS fatigue comes on quickly and is more severe.

    In college students, fatigue can interfere with attending classes, staying on top of coursework and studying for exams. Instructors and class peers who are unaware of your diagnosis may mistake MS fatigue for “laziness” and not understand the extent of your fatigue because you may appear to feel normal.
    How to Handle It

    Build your support network

    While it’s your decision who knows about your diagnosis, it can help to reach out and share it with instructors and friends who can then give you support.

    Developing a regular exercise routine with your health care provider is essential for keeping your energy level up.
    Pay attention to your body

    Pay attention to symptoms of fatigue and get extra rest when you need it.
    Be kind to yourself

    Avoid all night study sessions which take a toll on the body.

  • Difficulty Walking

    Three-fourths of people with MS have walking difficulties. Factors such as fatigue, sensory deficit and spasticity (sudden muscle spasms often in the legs) can make it hard to walk. Unfortunately, your classes may be spread out across campus and you may need to navigate stairs to get places.
    How to Handle It

    Take advantage of campus resources

    Many schools provide on-campus shuttle services for students with disabilities. Check with your school’s Disability Resource Center to see if they provide transportation on campus.
    Work with your health care provider

    Your doctor may be able to recommend occupational or physical therapy to help with walking difficulties. There are also medications available to assist with mobility and lessen pain flare ups.
    Schedule smartly

    Plan errands for the times of day that are easiest for you to move around or when you are already out and about.

  • Pain

    As many as 48 percent of people with MS experienced chronic pain according to one study. Chronic pain symptoms can include burning or “pins and needles” feelings. Acute pain is also an issue and is neurologically-related. Acute pain can feel like stabbing in the face and spine or aches through the whole body. When in pain, it’s hard to think of anything else let alone focus on classes or socialize with friends.
    How to Handle It

    Check in with your school’s Disability Office

    If pain episodes are interfering with your attendance and ability to complete your work, talk with someone at your school’s Disability Office about possible accommodations, such as a reduced course load.
    Work with your health care provider

    There are variety of treatments that can reduce the intensity and duration of pain associated with MS, including medications, cognitive behavioral therapy (CBT), acupuncture, and biofeedback. Work with your health care provider to find the regime that best helps you.
    Practice mindfulness & meditation

    These practices have been shown to help some people manage pain. In addition, they can also help manage stress and improve general well-being.

  • Emotional Changes

    Living with MS is stressful. When you add the immune changes and neurological changes in your body, it’s not surprising that people with MS often develop strong mood swings, irritability and depression. Your roommates and friends may not understand the sudden changes in your mood.
    How to Handle It

    Talk to your health care provider

    Clinical depression may require medication and psychotherapy, so talk to your health care provider about your options.
    Look for an on-campus or community support group

    “These groups are very familiar with the unique needs associated with MS and know what the area offers in terms of support,” says Roberts. “It’s a good idea to touch base with the leader of the group once a month, even if it’s a matter of making a commitment to do so. After a meeting or phone call, students with MS should always end the call with, ‘What else should I know?’ and ‘Who else should I talk to?'”
    Connect online

    If there isn’t an MS support group nearby, you can contact an online support group with chatrooms and forums for people struggling with MS, such as MS Connection.

Scholarships for College Students with MS

Students with multiple sclerosis have enough challenges in their lives without adding one more. For this reason, many organizations and private groups provide financial assistance to reduce the cost of higher education. The table below lists several scholarships open to students living with MS.American Association of Health and Disability Scholarship Program

Amount Up to $1,000

Awarded each year to an undergraduate student (at least a sophomore) with a documented disability.Elaine Chapin Scholarship Fund

Amount Varies

Applicants must complete a personal essay to be considered. The award is based on academic standing, financial need and the impact MS has on their lives.FOSRx Scholarship Program

Amount $1,000 (1), $2,500 (1), $5,000 (1)

Open to students with MS who have a bleeding disorder. Preference is given to students with health and science majors.Mary J. Szczepanski “Never Give Up” Scholarship Foundation

Amount $500-$1,000

Scholarships are awarded to high school seniors who raise the most money for MS.Multiple Sclerosis Association of America Scholarship LEARN MS

Amount Varies

Open to high school seniors who write an sssay application on topics associated with living with MS. Request application at 1-800-LearnMS.National MS Society’s Scholarship Program

Amount $1000 (6), $5,000 (2)

A nationwide review committee chooses recipients based on financial need, academic standing and the impact the disease has on the students’ lives.Patient Advocate Foundation Scholarship

Amount $3,000

Students must have been diagnosed with a “chronic, life threatening or life debilitating disease” within five years of applying for a scholarship.

How to Be Your Own Advocate

It’s normal for college students living with MS to feel isolated. In the past, your parents probably did most of the advocating for your academic and medical needs. However, learning how to self-advocate is an important part of transitioning from high school to college. Here’s how you can take charge of your rights and your health.

  • Know Your Rights

    All students must receive equal access to facilities, programs and activities on a college campus which receives federal funding according to the Americans with Disabilities Act and Section 504 of the Rehabilitation Act.

    To ensure your needs are being met, you should meet with the Disability Services office on your campus. Disability Resources coordinates support services and ensures you receive reasonable academic accommodations.

    After providing the required documentation, you’ll be given an accommodation letter to give to your instructors. Then it is your job to communicate with them about the accommodations you are entitled to, including assistive technology, and what has worked best for you in the past. The more specific you are about your needs, the better able your instructors will be to meet them.

    Once classes start, it is your job to stay in contact with your instructors about making additional modifications if necessary to ensure you succeed.

    The National MS Society has more information about your rights as a student with MS.

  • Take Charge of Your Health and Care

    Before graduating high school, your parents may have helped you manage your medical care. But once you’re living away from home, it’s important you understand your medical history and health needs so you can properly manage your own care.

    “As early as possible, develop a wellness plan,” says Roberts. “This looks like a written document of current medications, allergies and contact numbers of providers. It can also list who to call for specific concerns. Talk with your primary specialist about how things such as medications, follow-up visits, labs and other concerns will be handled now that you are 1) over 18, because now that you are an adult, your health team cannot speak as freely with your parents as we used to and 2) the logistics of moving away from your home medical time.”

    You should also understand who to call for medical concerns. “Students can advocate for themselves before leaving for college by asking their provider about which symptoms warrant a call to them versus a specialist or even the emergency room in an emergency,” says Roberts. “Also, they should ask about the one or two things that the provider feels are super important for people caring for them to know. Then, the student should add this information to their wellness plan and keep it close by in their mobile device.”

  • Know Yourself

    College is a wonderful time of self-discovery. It’s the perfect time to really find out what you enjoy studying and the kind of friends you like to spend time with. It’s also the perfect time to really get to know your body and what it needs.

    “As a nurse for more than 10 years, I am a fan of minimal guesswork. Know your baseline, vital signs and responses to changes in environment and stress,” says Roberts. “Students are their own best advocates. I like to say, ‘You are your expert in being you.'”

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