Resources for patients
Red Lily Foundation is focused on research but was founded by a family affected by POTS. They know the difficulties finding reliable information. Below is some basic information for patients including a general brochure and three videos. The videos vary from a medical seminar and patient interviews to changes that occur while living with POTS.
Also below, we have some tips from a teen based on our personal experience. For more information on others’ experiences please visit support groups such as Dysautonomia Information Network and POTS UK.
POTS is a difficult syndrome to deal with, it is physically and emotionally challenging. There is limited information, many health care providers are unfamiliar with it and few people understand. Dynainc, run by Debbie Dominelli, is an organization that has provided great comfort and strength through our journey. This is a tough ride and I don’t know how we would have made it if it wasn’t for her unconditional support and motivation. I encourage children, teens and young adults to visit their website for support and in turn, please support them in any way you can.
Learn the basics
Downloadable brochure from JOHNS HOPKINS Medical Center which contains General Information Brochure on orthostatic intolerance and its treatment.
Managing Orthostatic Intolerance
CHANGES: Living with Postural Orthostatic Tachycardia Syndrome
Patient’s Interview with Dr. Blair P. Grubb on POTS subtype Hyperadrenergic (MCA)
Tips from someone with POTS
What can you do?
In our experience, it’s not always easy to know what to do for someone who has POTS. POTS is a complicated disorder. It’s hard for the medical community to understand and unpredictable for the person affected. So it is completely understandable that friends and family may be at a loss over what to do!
If you said to me “I know someone with POTS. What can I do?” this is what I would say:
A) Ask Questions
Even if they don’t know the answers, talking helps, so ask, don’t be afraid to ask. People want to know that you are interested. If they don’t want to talk about it they’ll let you know. Ask about their condition, about how they feel and how they’re doing, but also ask about normal stuff like what’s going on with their family or TV shows they like or what about the latest fashion trend. Keep communication open so that you stay connected because this illness is only one aspect of their life. They are so much more than POTS and want to talk to you. Be a friend and remember…
B) Be Patient and Believe
Please be patient with them and know that they want to do things with you. They hate cancelling plans. They hate disappointing you and really want to be out and about: hanging out, doing things, living life. This condition is so unpredictable. People with POTS often don’t know how they will feel hour to hour. They can’t make firm plans. So make it easy by saying, “Hey, last minute works for me. I just hope you can make it because it would be great!” If you make it okay for them to join any time, it will help a lot. Imagine how frustrating it would be to cancel so many times. Imagine how many POTS patients just stop making any plans at all. It’s hard to live with an unpredictable condition, constantly disappointing friends and disappointing themselves. So, please don’t stop inviting them and remember…
C) Come Visit
Come over. Stop by. Drop in. Because even a short visit can mean a lot. They want to see you and hear all about what is going on in your life. They really do want to hear it because friendship is two-way. On the flip side, remember that it is hard to only hear about things that they can’t join in so make new memories with them. Play cards, watch TV, paint nails, eat and remember…
D) Do Little Things
Doing a little thing will mean so much! Sometimes little things mean the most. A text, a call, a short visit. It may not take a lot of your day, and it will make all the difference in theirs.
Don’t let not knowing what to do stop you from doing something because anything you do will mean a lot.
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