Most people with chronic conditions, no matter which one, know how exhausting traveling can be, especially flying. Unfortunately, people that suffer from Ehlers-Danlos syndrome and its comorbid conditions, sometimes do not have a choice. If there is no specialist in your country what options do we have other than saving money to go and see specialists wherever they are.
Now, Maryland has a lot to offer when it comes to Ehlers-Danlos syndrome. Specialists like Prof. Henderson, Dr. Sandhu, Dr. Francomano, Dr. Pocinki, Dr. Murdock and others call Bethesda their home. I refer to it as the Mecca for EDS, at least for EDS patients like me, that suffer from multiple cervical spine instabilities and much more.
As a patient in Germany, I was very desperate for neurosurgeons that would take care of my main issue, the spinal instability. Sadly, I could not find any local help but on the other hand was lucky enough to get to see Dr. Francomano, Dr. Henderson and Dr. Sandhu in Maryland.
Since this was my first flight ever and I was physically challenged, I needed to find ways and strategies to feel safe on that plane and to use as less energy as possible. This meant I had to create lists and prepare myself very well in advance so I would not get into more stress.
And here we go, with my personal advice for traveling to another continent. Read below.
Six months in advance:
Depending on how long you want to stay in the US you ought to apply for a tourist visa. This means you will have to apply online, pay money and see some US officers. There are also ESTAs that allow you to stay for some time, but if you want to visit the US more often, you should get a tourist visa.
3-6 month in advance:
Appointments with your specialists
- Book your appointments with your doctors and let them send you a confirmation via email with date, time and location of your appointment. This will make sure that you have proof if something goes wrong. Remember to give them an available phone number in case they need to contact you.
- Write down all your appointments with addresses, phone numbers (in case your phone battery is empty, and you need to know where to go).
- If there are more appointments on one day, for example, Upright MRI, CT scan, and your doctor’s appointment check them out on Google maps and leave plenty of time in between. Everything is pretty close together but still, in rush hour traffic, you should plan at least double the time.
- I usually plan one appointment right when they open in the morning, one around noon and another one around evening.
- This is very exhausting so leave at least one day before and after to recover before you fly back. Also plan some extra time for possible other appointments that might arise while in the US. Maybe your neurosurgeon wants to have another scan or a urodynamic testing.
Your international flight
- Book your international flight as early as possible. Flights are cheaper the earlier you book them.
- I use to book at least four months in advance if I can.
- Choose your seat wisely. I prefer seats that are directly in front of a partition wall because that way nobody will bump into my seat from behind and I can lean back the whole flight without annoying anyone else. I also prefer to sit next to the bathroom and always take the aisle seat since I have bad urinary urgency.
- You might also consider taking a small upgrade. Airlines like Lufthansa and KLM offer a new class of seating that is somewhere between Economy and Business class. They offer more legroom, and the seat is more comfortable. Additionally, you can lean your seat back further which makes a huge difference. I felt so much better after the flight.
- If your dates are a little flexible, you can get an excellent deal via Flightfox.
- I prefer companies that have representatives at my departure airport because if they cancel a flight, I can change it directly at my departure airport. (For example, I have to fly out from Nuremberg via Frankfurt before I can get on my international flight. If I fly with Lufthansa I can change flights in Nuremberg; I would have to fly to Amsterdam before I can change flights.
- Flight costs do change during different days of the week. Observe, learn and book on the cheapest day.
- If you have to change planes at some point, give yourself a lot of time. In my case, I have a short national flight in Germany and then the big international one. I always give myself at least 3 hours because I do not want to miss my international flight, and the distances at the airport are far.
- If you have a stop in the US, and you have to book a national flight over there I prefer Southwest. They sometimes are a little more expensive, but they have a great luggage policy, they do not ask you to check in your carry on like other US companies do always, they have a free seating policy, and there are no hidden costs. The only additional charge you can choose is an early bird check in so you do not have to check manually for your flight.
- Book a travel insurance and an overseas health insurance. This is one of the most important parts! You don’t want to spend money on a flight and then cannot make it due to sudden severe health issues. And you do not want to get into an accident overseas and pay all those emergency costs out of pocket. Treatment in the US is very expensive, and you need to be sure you are prepared for all circumstances.
- Mobility assistance and special meals:
- Book wheelchair assistance at the airport and special meals if you need them (many airlines offer a variety of special meals but sadly no histamine free as far as I know)
Places to stay
- There are many online hotel booking websites. I prefer using Hotwire if I have to find a deal around one week before the date.
- I used to stay at the American Inn in Bethesda which is close to all doctors and Downtown (so food, restaurants are close).
- Cheaper options are a little outside.
- Another common option is AirBnB.
- You could also connect with our huge international EDS community. Maybe you find a friend to stay with.
- Things to consider are the distance to doctors and appointments, distance to food and drinks, finances, accessibility, parking options.
- Some airports (for example in Germany) want you to tell them if you carry drugs like opioids in your carry-on or suitcase (especially if you carry the supply for six months). Make sure they know about it.
- Get medical certificates for all your carry on medication especially the liquid ones. Sometimes Security will check if you are allowed to take all of them.
- Make sure you order all your medicine in time and carry them all in your carry on. Have a little more than you usually would need, just in case.
- Check out your transportation options.
- Sometimes it is easier to take a rental car, but I use to get around by Uber. It is an excellent and easy service with reasonable cost. You only need to download the Uber app and create an Account. The cheapest way is using Uber Pool where you share your ride with other people close by. But they also offer UberX which is a private driver for you and some expensive options like UberSUV and others. Make sure you check the rate before you order your Uber. The more people that want an Uber, and the less Uber are available, the more the price will rise. I experienced rates as high as 2.5, which means that is multiplied by the usual rate. Make sure you have plenty of time to wait for a better price.
- In case you will not have internet access at the airport you can either take a cab (expensive) or book one of the many airport shuttle services like Super Shuttle.
- If you prefer rental cars, most airports offer access to different rental car companies. I prefer Enterprise since they have an excellent customer service, and we never had a problem with their cars. But make sure to take all additional insurances! The usual car rental price you will be offered is very small, but there are no protections included. You WANT insurances.
- Think about what you need for flying and order it before. For example, a seat cushion is my personal favorite. It helps a lot with back pain on a long flight. But also things like compression clothes can help a lot.
- Prepare for immigration officers at US airports:
- Don’t be scared, US officers are usually very helpful but have to ask you why you are in the US, how long you stay and some other questions.
Things I always carry
- Booking confirmation for the flight back home (they want to know if you leave in time of your visa status)
- Confirmations about all my doctors’ appointments (this will confirm why you are there)
- Screen shot of bank account to show that I can afford the time in the US (or alternative someone who claims responsibility for me in case of financial problems)
- Confirmation about the place I will stay during my visit
- Do NOT lie to them. Be honest and they will appreciate it.
Stay connected with your family at home
- Get a Skype account and add money there. Skype phone calls are very cheap so you can call your family at all times as long as you have WiFi.
- For German Citizens – take some confirmations for your computer (especially Mac Book, iPhone) with you for tax purposes. You might need to prove that you did not buy your electronics in the US…
- Prepare documents in the English language. You might want to translate your significant findings or give a short overview of all that matters.
- I had a symptom list with a whole history and explained the summary of all my German reports that matter, I carry all my MRIs and CTs and have all documents stored online.
- Have copies of your passport, vaccinations, disability card and other relevant documents with you and save them online or on your computer
- Carry emergency documents with you. Some multi-lingual brief overviews about your conditions and what to do in different emergency situations. Make sure to include your emergency contacts. There are many different choices like bracelets, necklaces or passport-like books with info.
- Leave some power of attorney at home with someone you trust like your parents in case they have to handle any trouble with your bank account or other in your country.
- Create lists with To Dos 🙂
- I find suitcases with four wheels the most helpful. Particularly for the carry on luggage because you can put your backpack on top of it and this way you don’t have anything on your back.
- I always need a suitcase and a backpack (30 L maximum, so it fits in foot room).
- Everything that is necessary for me to function goes into my carry-on and backpack. Medication, wallet, passport, my braces, laptop, seat cushion, all necessary food and drinks, emergency documents and other.
- Check luggage policy of your airline for size and weight! Overweight is expensive. Make sure you have a TSA accessible lock if they want to open your suitcase.
Other important things
- Find a local buddy. There is always someone in EDS online forums that lives in the Maryland/Washington area. To feel safe get a buddy that is available via phone if you do not feel well. This way you will feel a lot more comfortable.
- One to two weeks before your appointment:
- Call your doctors and confirm the appointments again just to be sure they did not forget it.
- Check all your documents and make sure you got everything from your To Do List.
Two – three days before your flight:
- Pack your suitcase.
- Pack your carry on.
- Start hydrating and resting.
- Avoid crowds of people (to prevent you from getting the flu, which makes many EDSers a lot worse).
- If you have problems with histamine (MCAS or HIT), hold a strict diet, avoid any acute mast cell episodes.
One day before your flight:
- Check in your flight.
- Only eat light meals that do not irritate your stomach.
- Rest. Rest. Rest.
- Check your carry on if all necessary documents are there (most important: passport, credit card, medication), all your bandages and helping aids you need.)
- I usually carry some electrolyte tablets with me and some tea bags to keep my stomach calm.
- If you are sensitive to cold temperatures, you might want to bring an extra blanket with you.
At the airport:
- Wear all necessary braces, compression garments.
- I am always wearing my compression hose and shirt, my SI belt and my neck brace.
- Wear warm and comfortable clothes; it can get pretty cold on the plane.
- Get your wheelchair (don’t be ashamed of any looks or comments).
- Buy food and drinks for the flight. (The served food on the plane is usually not very well tolerated for people with MCAS or irritable bowel, I prefer pretzels and a lot of water because they do not serve enough water to stay well hydrated.)
- Use Preboarding – EDS can disabling, even if others cannot see it, you are allowed to use the preboarding and get assistance with your luggage.
During the flight:
- Hydrate Hydrate Hydrate.
(Flying is very rough for Dysautonomia people, hydration helps me.)
- Stay away from alcohol.
- I sometimes have trouble with the chemicals they use in the air of the plane and to clean surfaces, so I take a little more antihistamines (talk to your doc about that before).
- I do not eat the food on the plane since they are usually full of histamines.
- Change your position, move a little in the plane, try to keep a good posture (you can put pillows on your back).
- I do not remove my neck brace during the flight because of possible turbulences.
Arrival at the airport:
- YAY you made it to the US. Be proud of yourself for being brave and arriving all by yourself.
- Someone will wait for you with a wheelchair right in front when they open the doors of the airplane. If not, tell the flight attendants.
- Get your luggage, go through immigration and take an Uber, your shuttle, your car or whatever you chose.
- Rest after your flight for at least two days.
- Jetlag can be very hard especially with Dysautonomia. My resting HR is around 130 for about 2-3 days after a long trip; my hormones are out of control, and I cannot sleep very well.
- Try to stay awake until at least 7-8 pm local time. This way your body will adapt quicker. You can sleep one h around noon if you need to. But not more.
- Do eat small meals at lunch and dinner time.
- Don’t do exercises or anything that stresses your body.
Seeing your doctors:
- Get up early.
- Wear your braces if necessary.
- Always have some snacks and drinks with you, it is going to be a long day.
- Have all your documents prepared and ready to show.
- Ask all questions on your list.
- Take notes.
- If necessary ask if you can tape the appointment so you will be able to remember everything after.
- Ask if you can communicate with your doctor via Email. That is a lot easier for patients from a different country and with the time differences.
After your appointment:
- Connect your US doc with your local docs! This one is critical.
- Write down and organize all your notes, plan your next steps.
- And last but not least, try to see something, go out, have a little fun so you won’t remember this trip only for its doctor’s appointments but more for experiences and happiness.
Things that are different in the US:
- You do not seat yourself in the restaurant; wait to be seated.
- You do tip everyone (10-20 percent, but more on the 20 percent end).
- You will pay mostly with the credit card.
- Distances are relative… You will learn that Boston and Chicago are only a 2-hour flight and therefore close.
- Buy a water filter and drink tap water, water in bottles does cost more than soft drinks.
- You will not have to pack your bags in the supermarket.
- You can order everything possible to your home, and you can drive through everything.
- Pharmacies are located in supermarkets.
- Smoking is prohibited in many areas; very strict smoking laws.
Author – Karina Sturm. To read more about Karina, see links below. You can also read her recently published Tenascin-X EDS article.
German EDS Website – http://www.instabile-halswirbelsaeule.de/en/
YouTube Channel – https://www.youtube.com/user/EDSandCCIawareness
Disclaimer – The views, opinions, and recommendations in this article are of the author and the author alone. Statements expressed are not to be misconstrued as opinions and guidelines proposed by EDS Wellness, its owner, the board of directors, medical board, patient advisory board, or its affiliates. You are responsible for your own health and safety when traveling. However, EDS Wellness is located in Bethesda, MD and can help provide information and other resources for travel, if needed. You can send an email to the EDS Wellness HelpLine – firstname.lastname@example.org.