<p>A fellow college parent needs some help and was wondering if anyone here has some experience to share. I will relay your thoughtful responses. I suggested she signs up for college confidential. If she gets connected she will probably also post in the specific college her child is going to.------------------------------------------
My 17-year-old daughter, who was recently diagnosed with rheumatoid
arthritis, will be heading off to an East Coast college this fall. She
now has trouble with small motor skills and with lifting/carrying
heavy objects (she's lost upper body strength now that she no longer
has full use of her hands). She also isn't supposed to use alcohol
because the drugs she's on put a heavy load on her liver. We're
figuring out day-to-day accommodations at home but I'm wondering what
kinds of challenges she'll have to navigate when she's on her own at
college. She won't be able to carry stacks of books from class to
class, keys and light switches can be problematic, and I'm worried how
the winter cold will affect her. If you are or have been in a similar
situation (with a college-bound child with RA, lupus, MS, or any other
chronic condition that affects energy and mobility) I'd really
appreciate hearing from you.</p>
<p>Some colleges have assistance programs for students with disabilities. I suggest searching the website for the particular prospective college (or colleges if not yet decided) and seeing what accommodations they might offer. Beyond that the college can be contacted and queried as to whether they can accommodate the particular needs this student might have.</p>
<p>One of my favorite teenagers ever has RA. I have no info for you, just wanted to wish your daughter lots of luck.</p>
<p>I do wish you the best. The new drugs are certainly helping so much. My sister “did college” with RA several decades ago. She was on gold and methotrexate had claw hands and no use of her thumbs and much joint stiffness. She is actually doing better today on the new drugs. She had trouble with stairs in college. In general she carried a backpack, swam every day to keep loose, did not have one additional pound of unnecessary weight on her body. She got up extra early in the morning so she coud soak in hot water to loosen up which she said was the biggest bummer in college. She used the wheelchair ramps instead of stairs on campus and only got cortisone shots if she wanted to go to the football game or somewhere she knew she would have to tackle stairs or big hikes/climbs. Your d could use a rolling backpack if she can’t hoist a regular backpack on her shoulders. She may need to get up extra early to loosen up. If she hasn’t figured out a coping mechanism, she can turn most light switches off and on with the back of her hand of elbow. My sis has become so adept at that people that don’t know her don’t realize why she does that. Her desk lamp should be a push button. I’m uncertain how my sister handles keys, although she had a car in college and must have been able to get keys in and out (she has no use of her thumbs) and of course still drives, uses keys to her house, etc. It’s not easy, but college can be done. Making friends will be helpful with cafeteria trays or heavy plates if she has trouble grasping and has weak hand strength. Anecdotally my sister was in a very competitive engineering school with at the time mostly guys. Make sure she finds a good rheumatologist in her college town to keep an eye on things. I can tell you my sister has always drank a few beers socially then and today even though you are not supposed to on the new drugs…I’m not sure what my sister’s rheumatologist thinks about that but…</p>
<p>Momofthreeboys has some good advice.</p>
<p>I’d second the advice about finding a good rheumatologist – is your daughter’s RA considered pediatric RA, and, if so, does it have a different pattern of flares and treatment than adult RA? </p>
<p>Has she used a dose pack for steriods? If that’s applicable, having one with her could be a real help rather than trying to deal with pharmacy issues on a weekend. (Not sure if it is applicable to RA, though.)</p>
<p>The college ought to be willing to change door handles on her room to lever-handle doors, which are much less painful to use than are those that require grasping. Ditto on shower handles – especially if the shower is in a suite rather than being a gang shower down the hall. Keys are a problem. I like this helper, and it is really cheap:
[EZ</a> Key Turner](<a href=“http://www.arthritissupplies.com/site/371928/product/AEN15]EZ”>http://www.arthritissupplies.com/site/371928/product/AEN15)
This company has a bunch of other supplies that she might find useful.</p>
<p>A book holder could be helpful, but it might be possible to avoid books almost entirely with a laptop and a Kindle. </p>
<p>Carrying trays can be difficult, and worse, many schools have eliminated trays in favor of students juggling all of the individual items. She might just need to ask for help with this. </p>
<p>I found a palm pen that didn’t require a finger grip, but avoiding hand writing was pretty important. Typing wasn’t as bad. I would think that she ought to be eligible for notetaker services, and possibly a scribe for exams. </p>
<p>Does she find the hot wax hand bath to be helpful? That ought to work in a dorm room.</p>
<p>The biggie that I just don’t know about is fatigue. Stress and college seem to go hand in hand, and since stress also triggers disease flares and fatigue, that’s an issue. I wonder if someone at the Juvenile Arthritis Foundation might be helpful.</p>
<p>That key turner is what my sister uses or something very much like it! I recognize it now and remember…it’s on all her keys. Cool. Cool. Also the lever door handles are a great idea and so prevalent these days with ADA regulations.</p>
<p>Some dorms now use swipe cards rather than keys, for front door and room door…if that’s any help at all. </p>
<p>In winter she might like “glittens” which are glove/mittens as a warm, flexible alternative. Less taking on and off gloves all day so hands stay warmer. They begin as a glove with all l0 fingers stopping just above the knuckle so each bare fingertip is free to grasp things (open a bookbag tie, for example). Then there’s an attached mitten-cap that just comes on-and-off to button close when all the fine-motor is done and she just wants to walk around as warm mittens. I saw them first this year and like mine. They’re very cute and warm.</p>
<p>Different item: there’s a lightweight stockingknit glove (imagine socks but built for your hands), costs about $5/pair, very common in the Northeast. They’re useful starting in late Sept/early Oct when the air just starts to chill at night – not yet full winter gloves. They come in every color, stripes, polkadots, whatever you like. They’re sold in drugstores or any department store at that time of year. I buy 2 pair in the same color every autumn, because I lose them too easily. </p>
<p>Students can update me, but I recall college was a big relief from carrying many books at once. In highschool I had to carry everything half the day, because visits to locker couldn’t always be arranged. In h.s., one class comes right after the next. In college she’ll attend each class 2-3 times weekly, not need the book for every class, can return to dorm room to pick up only what’s needed for that afternoon. Often I went through the morning with just 2 notebooks for those classes, and all the required reading textbooks back in my dorm. Again, I’d like to hear a college student bear that out, but I recall book-lugging was l00 times worse in highschool than college. </p>
<p>If she tends to feel cold all over her body, encourage her to try wearing some type of soft hat starting late September, like a beret. 80% of body heat escapes from the head, so popping on a hat helps the rest of the body feel warm and more relaxed. Similarly, wear a nice fleece or even cashmere sleeveless topvest mid-autumn. If her torso is warm, then her bodyheat can go serve her limbs and extremities more.</p>
<p>She may have the easiest time of anyone making responsible choices about alcohol. She can say she can’t partake for medical reasons. Period, end of conversation. Airtight reason to decline without sounding judgmental of what others do. </p>
<p>Contacting the college’s disabilities office (or officer) now might give her helpful information on choosing a dorm; even ask if there are differences in which ones have any “too cold” complaints. Ask there if there’s a student mentor (someone on campus now) she can email for more tips and advice.</p>
<p>Look at the dorm layout maps if she can; try to get a south-facing window (those are warmest, sunniest). Second best: east-facing. Coldest: North-facing.
My older 2 attended college in the Northeast and generally their rooms were too warm! </p>
<p>I know RA is tough, and with a new diagnosis you got an unexpected surprise, it sounds like. Most colleges in the Northeast are not Antarctic. Once her basic medicines and warm clothing is in place, I also hope for her that the distraction-factor of being in College (!), an exciting place with new experiences each day, will keep her mind focused outwardly.</p>
<p>I’m not sure this is particularly helpful, but when she is with friends or potential friends, she can just come out and tell them. I have a displaced bone in my foot that can make it very painful to walk if it somehow gets aggravated (like hopped on or bumped). When I was at one of my college visits, I had to walk very slowly because of the pain. I know I didn’t want to slow my friends down, but they said to me are you kidding, we will carry you if we have to! I know this doesn’t relate directly to RA, but sometimes it helps to just be honest instead of shy.</p>
<p>I think there is a CC poster in the past whose D had RA. You might try doing a search or maybe someone else will remember her name.
My sister has RA and due to medication is now the best she had been in her life. Good Dr is a must. Also something to check into if she has to go to the dr for drug treatment that there is a Dr in her college town who administers her medication. My sister moved to a smaller town with only 2 rheumatologists but only 1 administered her medication. She didn’t like the guy but was stuck with him since that medication was working well for her.</p>
<p>My s doesn’t have RA, but he has Crohn’s disease, and the same IV infusions are used in both autoimmune diseases. So, I have a few comments for the OP re: treatments and doctors in college. He is a college freshman, and chose a distant school. It has been a perfect fit for him, but we knew we would encounter some issues with continuing his treatments out of state. </p>
<p>First of all, our son’s GI specialist here set him up with a doc out there. I now know that it is a priority to have a visit with the new doc before any problems arise (I stress that because we mistaknely DID NOT do that, and my son was ill shortly after arriving at school. Then we had to scramble to deal with the illness on a more urgent basis while we were long distance- always more difficult than if the relationship had been set already. My son dealt with it mostly himself, I handled a few calls mainly dealing with doctor’s offices re: insurance issues, etc…and then did the worrying!)</p>
<p>Secondly, the health service is your d’s best friend in case of a flare or other illness that is so much more worrisome since these kids are immunosuppressed from the meds and disease itself. In my son’s case, they were instrumental in getting him to the new doc (actually arranged transportation off campus), and followed up with him afterwards. </p>
<p>Thirdly, with these several hours long IV infusions that in my son’s case, and in many RA patients, are given every 4-8 weeks depending on circumstances, there has to be a plan for getting them. My son has had most of these when he comes home for breaks. But some have to be given in a hospital near school, and not any hospital can do this. It takes specialty care coordination, AND insurance is a major issue. We’ve had to deal with major hassles with the latter. It is worth it to look into that carefully as well.</p>
<p>Alcohol he handles well- just doesn’t/can’t drink, and has not had any problems with social hassles there. He also continued his same theme as in high school- told no one about his disease, neither teachers nor even good friends. I disagree with this, but that’s him. For a student with RA, that approach is probably not feasible with more external physical manifestations.</p>
<p>PM me if more info needed!</p>
<p>I did a quick search of the parent forum and it looks like there is a good thread on Chronic Illness that should give you some good information.</p>
<p>I had just put a flyer about RA in my recycling pile–my DH is involved in a knee study and brought it home–unfortunately the deadline was yesterday (but I’d check; it may have been extended). The info may help in the future:</p>
<p>[Scholarship</a> - Reach Beyond RA](<a href=“http://www.reachbeyondra.com/scholarship]Scholarship”>http://www.reachbeyondra.com/scholarship) or call 1-888-854-4996</p>
<p>I can’t offer advice about accommodations on college campuses, but would like to offer encouragement and hope for better days ahead. If she was recently diagnosed, she may not yet be on the newest drugs (the insurance companies usually make the docs start with the older, less expensive drugs and then “move up” as needed), or if taking one of the new biologics, may not feel its full benefits (it can take several months). I’ve had RA for 10 years and the first year was the worst in terms of symptoms. You would not be able to tell that I have RA now. Good luck!</p>