Traveling with JM

Planning a trip or vacation can be challenging, especially when you have a child with juvenile myositis. With spring break and summer break just around the corner, the pressure might be even greater. However, at Cure JM, we want to help ensure that you and your child can enjoy all the delights of a vacation with minimal stress. To assist with this, we’ve compiled ten tips tailored for your next spring break or summer break getaway. We hope they will make your journey smooth sailing, flying, or driving.

  1. Bring all your child’s medication in your carry-on so it doesn’t get lost. You should be aware that you must declare to the agents if you have extra liquids, sharps, or anything out of the ordinary. This just means let the airport personnel at the security checkpoint know anything you have packed that might be flagged by the screening process. Some families have noted that they package their medication in a stiff clear makeup case. 
  2. It may be a good idea to bring extra medication. In case a pill gets lost or dropped, having a few extra will be a lifesaver. Also, don’t forget to pack and bring extra supplements like vitamins, melatonin, tylenol, and zyrtec.
  3. Plan IVIG, infusions, procedures, and tests ahead of time to work around your travel plans.
  4. In case of emergency, have a local pharmacy and hospital located ahead of traveling. Find ones close to where you’ll be staying. If possible, check out our Clinical Care Network for specialists JM doctors that may be near where you’re traveling to.
  5. Carry (in your wallet or with your ID) a list of all your JM child’s medications and dosages. This will be helpful should your medications get separated from you and you need to order a small dose at a nearby pharmacy.
  6. If you’re planning to stay away from home, you might want to call your hotel or the place you’re staying ahead of time to make sure they can accommodate any needs your child may have.  You can request a refrigerator or other appliances to make the stay with your JM child easier. You might request a room near the elevators, so there is less walking. Luggage carts, valets, and bellhops might also be helpful.
  7. Contact guest relations or disability services, prior to your visit, if you’re going to an amusement park. Some parks offer special tags to attach to wheelchairs and strollers, so your JM child does not have to stand in long lines.
  8. No matter what time of year it is, the sun is always out and can affect JM children even on cloudy days. Bring sunscreen and proper UPF apparel to keep children safe. The sun can affect JM children when it is overcast, snowing, and even when they are inside, so plan accordingly.
  9. A few things to consider packing your JM child are appropriate shoes, a water bottle (to help stay hydrated) and even a medical ID bracelet. Should an accident occur, it is important for first responders to be able to identify the medication your child is on (especially if they are on steroids) and an ID bracelet would help with this.
  10. Lastly, if necessary, consult your doctor prior to traveling.

A Grandparent Spotlight – Anita

Cure JM recently had the pleasure of interviewing a remarkable individual who hails from Canton, Ohio, and brings a wealth of experience and love to her family. With a vibrant history spanning over five decades of marriage, three daughters, and a rich tapestry of grandchildren and great-grandchildren, Anita Mottice’s journey is as inspiring as it is heartwarming. As a retired nurse and devoted wife, Anita shares her profound connection with her family, particularly her grandchild Sydney, who has been diagnosed with Juvenile Myositis (JM).

GCOM 2024 Round Up

Recently, Cure JM’s Jim Minow was able to attend the Global Conference for Myositis. This conference was not only informational, but was a most impressive day for Cure JM. The conference brings together leading myositis researchers from around the world to share results and collaborate on future projects leading to better care and improved treatments for our JM kids.

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