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This is Debbie from DYNA (www.dynakids.org). Michelle is someone I greatly admire and she gave me permission to spy on you guys a little. I really learn about about how to help the kids by listening to you. Unfortunately, they keep me so busy that I don't have a lot of free time to spy! If you don't mind I will be logging on now and then and reading your posts etc. Also, I'd greatly appreciate it if you would tell kids or parents who come to this forum about DYNA. As you know a whole world opens up for you when you finally find out you are not alone. I will be sending adults to Michelle and you guys. Thanks for being the heroes and setting the path for the kids who follow after you. Stay strong!

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Hi Debbie!

I looked at your site the other day after Michelle's link. It is wonderful. So colorful with good stories to share with kids. One quick suggestion....when I read the section on "Why is it I haven't heard of POTS...." I was a bit concerned about the Cancer example. While it is perfectly true and valid ... I think my daughter might be frightened to read about POTS and Cancer in the same sentence. Maybe caveties, or chickpox, or cold sores!

Thank you very much for spreading the word especially with these very young pioneers.

Good thoughts,

EM

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I am a young adult in DYNA. Debbie told us older DYNA members about DINET. I think the way she explains POTS is very good. I know that it really helped me to understand that no matter what a person has...dysautonomia or not...there can be a different level of functioning and a different degree of illness. Debbie works w/ her medical advisory board of physicians before putting anything up on the DYNA site regarding the health aspect. She also explains everything to us kids in terms we can understand. A lot of what is on the DYNA site is to get the schools to understand us kids. Teachers tend to brush us off as not being sick and as faking and it is a tremendous problem getting support from our school systems.

susie :)

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Thanks for the input on the cancer comparison. That actually came from a physician who treats many of these kids. I will have the web site people look it over. It probably would read better if it said ?Why have I never heard of ?dysautonomia? before?not specifically ?POTS?. What he is actually saying is that like cancer ? dysautonomia has many degrees and many forms and some respond to treatment and some don?t etc. Also, that in the past people didn?t know what cancer was but now people do. Someday people will know what dysautonomia is too. The kids will mutiny on me if I compare dysautonomia to cavities and chicken pox and cold sores though (however I know what you mean by that comparison and that you were not downplaying the conditions).

Tragically, we have more than POTS and NCS cases in DYNA so it is very hard to word things addressing everyone sometimes. The DYNA kids all know about fatal cases because we have some kids in our Postal Outreach with a fatal prognosis (obviously not POTS or NCS cases). The kids are very supportive of each other and we constantly stress the differences to them. It actually helps them to be able to help each other with support issues. They write our sicker kids and send cards and care packages etc. While it may scare them to know that there are fatal cases, it is a fact of their lives and we constantly stress the differences in forms of dysautonomia with them. The able kids in DYNA become advocates and are constantly working as a group to promote awareness of dysautonomia conditions. We have kids from 1 year old to 26 years old so it is a wide age range. The average DYNA member is a teenager. Tragically, it tends to be our littlest ones that are on oxygen, feeding tubes, etc. The older kids take them under their wings. Yes, soon we do expect we will have to deal with losing someone (we have a little one with hospice services currently) and getting through this is going to be upsetting for us all. For now, we are just all glad that we could be there for these children and their families when things were at their worst.

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Debbie and Susie, we're so glad to have you here. I wish that when I was growing up, there was something like DYNA for me!! I just posted elsewhere on the board that I've had POTS/NMH all my life--and started fainting at age 10. I didn't get diagnosed until I was 31!!!! What a blessing for all your members to have such a resource.

As an adult with dysautonomia, I'd like to share with you my thoughts on having this all my life. This may sound strange, but I think I've had it easier that most because I never was "normal." Since this is the way my body worked from the beginning, I've got nothing to miss--for me this IS my NORMAL. I was an older teen by the time I realized that other people didn't feel like me inside when they did things like go outside in the summer, or when they exercise, or when they get out of bed in the morning.

I sometimes feel really badly for those who've suddenly developed dysautonomia--they've had a good taste of how it feels to have a body working correctly, and then lose that and have lots of limits that weren't there before. I'm sure this makes them very sad, angry, and maybe even leaves them feeling a bit helpless because they have no control. This is where I feel most lucky; I don't really get sad about my illness.

I think that your info page on "what is dysautonmia" and why most folks don't know what it is or what it looks like will be so very valuable. It will really help the people who live, work, go to school or take care of (like doctors and nurses) people with autonomic problems to understand. That goes for kids with dysautonomia and grown ups too!!

Again, so glad to have you here :) Nina

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