This is just a bit of a bright note. I just finished a bit of a holiday prior to a 5-day conference in Brussels, Belgium. I had to fly with the Besremi then store it for 6 days once in Brussels. The Besremi stayed in the Yeti cooler bag with 2 ice-gel packs for over 12 hours with no problem. TSA security was no problem doing the visual inspection since it cannot go through x-ray. They did not ask for the signed doctor's note. There was no refrigerator in the room, so hotel staff stored it in the hotel fridge with no problem. For all those planning travel with one of the interferons, know that with a bit of planning it is no problem at all.
The holiday was terrific. I have been all over Brussels and did a day trip to Luxembourg. Lots of interesting sights, good food, great chocolates, and excellent beer.
The next five days will be at a Neurofibromatosis conference, another rare disease I am involved in advocacy and work with. When I get home, I will be off to the Summer Camp for youth with NF and other chronic diseases. We will be doing more work this year helping youth transition into adult care. It is a huge challenge for young adults to learn how to manage their own care. In truth, it can be a challenge for older adults too.
For any of you in the Mid-Atlantic in the USA, there is a Patient Conference in Asheville, NC in August. mpnadvocacy.com/event/ashev... I am attending and hope to see some of you there. I still plan to try to make it to one of the MPN Voice Patient Forums in the UK someday. Hope to see some of you there too.
Happy travels and all the best to all of you all!
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hunter5582
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That's a happy, happy post, Hunter. I'm glad you enjoyed Belgium. I have only had a couple of little visits to Bruges and Brussels, but then I didn't have to travel so far as you did. I am impressed with your planning for flying with the meds. It's good to hear from you. I am enjoying the summer here, in the UK, which started just before the solstice. When I say enjoying, I am not getting out much, just hospital visiting every other day and doing lots of adminny type stuff on my days off. Sadly, my partner's diabetes is very brittle but it would seem that the hospital are keeping him against his will. I'm hoping he will come home soon and be back to his normal independent self.
So very happy you are enjoying a well deserved holiday before the conference. Wanted to thank you again the knowledge and help you share with all of that are not well versed in MPNs.
Wow, what an inspirational update. Very happy you have had some personal time mixed in with the business of MPN and NF. Thank you for devoting time and energy to these topics. Your experience and expertise is appreciated.
Hi Hunter, glad you liked our little country. There is more to visit, so if ever you come back to Belgium give me a sign and I will give you some suggestions!
You are having a great time, good. It is good you are able to help these organisations, they will certainly benefit from the vast range of info and help you will be able to give them!
Thanks for the lovely positive post, great photo and tips re.travelling with meds; it’s very reassuring to read that these things are still do-able. Great way to start your summer!
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