We Need An Organization That Represents Us

[ajw4790]

DINET is absolutely wonderful as an organization that educates and helps patients, caregivers, and families with dysautonomia. It is also great as a resource for any individual looking to learn about dysautonomia, because they know someone with it etc. DINET is also wonderful for many other things that I don't really think I need to list. I love DINET and everyone who has worked tirelessly to make it possible.

There are also a few other sites and organizations that also work on awareness and being a source of information.

BUT, there is no ONE organization or association for Dysautonomia that works like the American Diabetes Association or Multiple Sclerosis Society. Or if there is such an organization I am not familiar with it (and it clearly has room for improvement).

How do these organizations come to be? Anyone have first hand knowledge of this kind of thing? Or have family and friends that might? How would this work for people like us?

I think there are WAY too many things being overlooked, ignored etc. right now because there is not one main organization or oversight committee for individuals with Dysautonomia.

And without some kind of organization like this I do not see things improving greatly over time.

Things that I am concerned about or think we need an organization to deal with:

- We need a group of doctors that perform research and treat patients with Dysautonomia from many hospitals/clinics/cities that communicate and work together to form more cohesive definitions of the terms used to describe, diagnose, and treat us. There is too much of a difference between locations, and it is hurting us as patients with getting treatment, insurance etc.

- We need lobbyists and other political people to work in our favor in the political realm. People to lobby for bills to be in our favor, work to keep our few available treatments available to us, and to help target the right people to further research and developing treatment options for us.

- We need one place that oversees everything and everything gets reported back to.

- We need a place that our current doctors can reach out to and get reputable information. And not one answer from one institution and yet another answer from another institution.

- We need an organization to recruit and train knowledgeable doctors on Dysautonomia.

(I am getting more and more concerned on this one as there is already so few specialists, and many of them are not teaching a new generation of specialists.)

- We need an organization to seek funding to make these things possible.

There are many more things, but this is what came to mind...

Am I the only one that feels like this?

Is there something out there?

How does something like this happen?

Any ideas out there?

[firewatcher]

Groups with that much power (to have lobbyists, fundraisers, etc.) effect a lot more people than we have. The American Diabetes Association was started by 28 doctors, 60+ years ago. Right now, WE might have 10 doctors who might agree on the term POTS, but not on treatment or presentation. So far, too few have been stricken and even fewer know anything about it! If some multi-billionaire has a daughter that becomes diagnosed with POTS, we might get something thrown at it, but for right now it is hard enough to get our families, much less our doctors to even recognize that this IS an illness.

We have the best we can get, right now...

As awareness slowly spreads and understanding is gained, we might see more interest, but I hope and pray that this "syndrome" never gets a big enough population to warrant that kind of firepower.

Can we attempt a greater awareness? Sure, but that takes a lot more time and dedication than any of us could possibly give.

sorry if I'm a wet blanket.

[issie]

Okay, firewatcher that makes sense. And AJW, I'm on board with you.

But,...... I do have a suggestion that may help us. I've given it before in the suggestion section. What if we had a video made by doctors that first off describe all the things that can cause and contribute to POTS and then list all the rememdies that could be tried. It's sort of like what is on the written pages of the DINET site. But, we're more likely to get doctors to watch a video than to read a paper.

Maybe you could show the differnt components of our illness - like MCAD, tremors, BP readings and pulse rates, naseau and dizzy spells, fatigue, inability to walk, exercise intolerance, EDS . . . . .(get the idea?)

This could also be shown to friends and families that still wonder how severe is it. They could see that doctors are taking it serious and that it is so complex with all it's issues - that we truly are sick and would appreciate help and reassurance. It could even be sent out to insurance companies, and doctors offices to educate them on the illness. I'd pay to get one sent to some doctors. We could have some sort of a fund raiser to get it noticed on the news. These things wouldn't cost a lot of money and it would sure help us and get it better known.

[nmorgen]

I feel the same way. I wish that we had more "fire power" as you say. I pray for it, because without it we can't really get effective treatmet or research. I guess if you have the POTs that they claim will just go away in time, then your lucky and I hope it truly does go away. I'm stuk with the hyper POTs, that I will have to suffer through for the rest of my life. I'd like more research to find out what is causing this and treatments that will actually help me get better, not just mask the tacchy, but leave my body with the same problem. I also think that there are a lot more people suffering with this out there, being told they have anxiety or mental problems. I'm sorry this has got to stop at some point.

The Komen Org wasn't started by Drs. It was started by 1 woman who's sister died from breast cancer. It is now one of the biggest cancer organisations there is. Would it help if some billionare's daughter got POTs, I'm sure it would, but I don't think that we should have to wait for that to happen. I have been contemplating this for about a year. Starting a non profit. I think if we are to move forward this will have to be done at some point.

[bellajulz]

I completely agree and tried to look this info up myself. Yesterday I came across a youtube channel with a Doctor who has pots and is working on starting a non-profit in California. Here is a link to a news segment on her and Pots also if you look at her channel she has video on her progress to start a non-profit. Her name is Margaret Aranda-Ferrante.

[flop]

Issie,

have you seen the DINET documentary DVD "Changes"? This film includes most of the things that you listed in your post

- 2 doctors who treat autonomic dysfunction

- 2 patients explaining how their lives have changed

- demonstration of the varied symptoms of POTS

- discussion and lists of medication options.

The documentary took a lot of effort from the team who made it and is perfect for showing to both family/friends and sending to your doctors.

The main difference between running non-profit organisations for mainstream illnesses (such as diabetes, cancer, MS) and running one for rare invisible illnesses such as POTS is purely the number of people affected. Almost everyone knows someone with diabetes or cancer (1 in 3 of us will get cancer) so the whole population is aware of the condition. Where as hardly anyone has heard of POTS unless they have it themselves (and usually after a battle to find out what is wrong).

When lots of people are affected by an illness you only need a small proportion of them to donate money to collect a large sum of money to use for education and research.

When an illness is rare and disabling most of the people affected have little energy to give and are often in difficult financial situations.

DINET was founded by Michelle Sawicki because there was nowhere to find out medical information about dysautonomia. Michelle created the huge collection of medical literature that is on the main DINET site that allows us to research our own condition and guide our doctors. Along with the DINET website she formed this forum to let us share information with other people suffering the same symptoms.

Running DINET and it's various projects (maintaining the website, running and moderating the forum, the t-shirt project, making and distributing the documentary etc) takes a huge amount of time and commitment and it is all done by volunteers who themselves have POTS or other autonomic disorders.

I would love to have a huge non-profit organisation fighting for us but without lots more people and lots more money I don't see how it can be achieved. There are thousands of charities for different rare-diseases but how many of them have you heard of??

An approach that I favour is begining to grow in the UK. "Rare Disease UK" is an alliance for people with rare diseases and all who support them.

Key statistics:

there are over 6000 recognised rare conditions

1 in 17 people will develop a rare condition at some point in their lives

3.5 million people in the UK will be affected by a rare disease at some point

30 million people in Europe are affected by a rare disease

By joining forces with other rare diseases our voices can be more clearly heard. The much larger numbers of people in this sort of alliance mean that the group has much larger lobbying powers.

Stratergy:

- research into rare diseases

- prevention and diagnosis of rare diseases

- treatment of rare diseases

- information on rare diseases for patients and the public

- commissioning and planning for rare diseases

- care and support for rare disease patients

by working together this alliance managed to get an early day motion in parliament calling on the government to adopt the stratergy above - it was signed by 71 MPs.

My personal belief is that by joining forces with other rare diseases we have a much better chance of getting the attention, funding, research and treatments that we need.

Flop

[issie]

Flop, I have seen the DVD. But, I think in addition to that one - maybe a follow up one that is more technical would be beneficial. It would probably be over the lay person's head but the doctors would understand it. If, it could talk about all the different components that can cause and/or be related to the POTS issue and then what to do to find these things and then treat them. Then there would be a list (a, b, c). It could be shown what could be tried if you have hyper POTS with MCAD or EDS etc. Then there is not so much trial and error and it takes the research part out of it for the doctors that would be treating you. Since there are so few of us - the doctors don't have the time to DO the research for 1 patient out of 1,000's. If, we had a video, maybe they would watch it and we could at least get BETTER care.

[issie]

Thanks for the info on how DINET came about. We are so glad to have it. I appreciate all the work that has gone into it and into the site. I noticed since the new forum site, there is alot more info in the research section. Of course, I have not looked at it in awhile.

The CHANGES DVD is wonderful. It will help at least some people to understand it better. I've found some of my friends glazing over with the technical part of it though. I think having the technical part in one place and the symptoms and lives of those with POTS - would suit what I need it for. (To show friends and family - I'm not the only one with it and the severity that can/could happen.) (To show doctors - it is real and what to look for to find the different parts of the SYNDROME and what to do for it.) I know this would take a whole lot of work to get all the info put into one place - but it would help so much. I know as science and medicine improve - what we know now will change - but there are some solid things that could be suggested, for what we do know now. Of course, what will work for one - won't work for another - but, we won't know that until we try it.

[flop]

Issie,

I now understand your question. Unfortunately the doctors who do treat POTS etc all have their own ideas and don't use the same medications or treatment strategies.

For example my local cardiologist in the UK read a paper that showed that one SSRI (Paxil = Paroxetine) was helpful for POTS and started me on Paroxetine. I was then seen at a UK specialist centre where the doctors say that all SSRIs are really bad for POTS and it may be causing my symptoms. Then I travelled to the USA and saw a specialist who said that SSRIs are helpful but that combination meds like Cymbalta may be even better.

3 doctors = 3 different answers.

The same applies to sub-groups of POTS or causes of POTS. Some doctors firmly believe that Ehlers-Danlos syndrome is a cause of POTS, another specialist thinks that EDS is overdiagnosed and that there is no proof of a connection (just co-incidence that many people have both POTS and EDS?). One doctor uses high-flow, low-flow and normal-flow as his descriptions of different sub-groups. Other doctors use hyperadrenergic POTS, post-viral POTs etc.

POTS is almost certainly not one disease but many different diseases sharing some common symptoms (this is why POTS is a syndrome = collection of symptoms not an actual disease).

Because every patient's POTS is different, every patient's treatment needs to be different too. Some people respond really well to say beta-blockers but other patients feel ten times worse on the same beta-blocker. Even the top specialists are using a trial and error approach on an individual patient basis. To create a fixed treatment regime for POTS just would not work. The best we can achieve at the moment is a list of medications that have helped some people (such as the list in the "Changes" DVD). There is no way of predicting who will respond well to which medications.

Until a lot more research has been done we are a long way from being able to product the sort of guidance you describe. Unfortunately because POTS is so rare, medications wouldn't bring in mega-bucks for drug companies so the drug companies don't pay for research. (A new medication for heart disease, diabetes or high cholesterol can earn billions of dollars for a drug company so that is where the research money is spent).

Flop

Flop

[yogini]

I agree that it would be nice to have an organization dedicated to advocating for dysautonomia patients. A rare disease organization would help, but something more tailored would be even better.

I agree with what flop says about doing a chart or video. We are all so different, so treatment is experimental and not even agreed upon by the docs in all cases.

I'm guessing that the biggest issue is funding - we would need someone famous with money or access to money in order to make any progress - like a politician or celeb. Like when Katie Couric's husband died of colon cancer, she raised awareness and now people get routine colonoscopies. Not that I'd wish POTS on anyone, but maybe someday someone famous will take up our cause.

It seems like Dynakids does some advocacy, though. I think parents will go the extra mile to help their kids. Many of us here on Dinet seem to be using all of our energy just to take care of ourselves and our families - it's hard to take on extra obligations.

[tilly]

Is dinet affiliated to any charites ? does anyone know .... this would help to futher the cause of getting pots better recognised, ... in the uk we have one particular charity that is supporting pots and i have seen information grow over the past twelve months here ... ( could dinet become an affiliate our charity in the UK ?? ) ...

Here we have a cival honours award that goes to people who do good work for their society ... i wonder what would be the equivellent of an honour or an award for services to the cause in the USA ??... Maybe Michelle could be nominated for such an award if there is one, this would raise the profile of Dinet giving Michelle notoriety within the media ...

I think most charities were born out of patient led groups ... ( WELL DONE MICHELLE ) without you and certain charities here we would be struggling even more than we are now ....

just a few of my thoughts on this subject ...

tilly x

[firewatcher]

Here in the US, we have NORD (National Organization for Rare Disorders) but they do not have a "report for this condition." The problem with joining with a national organization is that DINET would probably have to give up autonomy and meet some bureaucratic policy stuff that might hinder the freedom found on this site. I would guess that Michelle has probably looked into this already and has a good reason not to affiliate with a bigger organization.

I second the (WELL DONE MICHELLE!)

Edited September 6, 2010 by firewatcher

[MightyMouse]

DINET is one of the few organizations that represent us. The four largest groups for us that I'm are of are DINET, NDRF, DYNA and FamilialDysautonomia.

Even with more common diseases, there are often multiple representative organizations.

Each organization has it's own function, but we do often work together...for example, people who are organizers of two of the other organisations frequently exchange emails in private over major issues. Additionally, there are multiple physician groups that advocate on our behalf (see Heart Rhythm Society's page for what they've done to help us keep midodrine available). Is what you're asking "do we have an organization to advocate for us in government and community issues??"

In order to do things like lobbying for funding, unfortunately requires either someone(s) with the physical energy to do so, and the $$ to pay for trips to political offices, hearings, etc. So to make money, you need money. Lots of money.

On DINET's very limited budget (all donations) and staff (all volunteers), Michelle's focus here is to provide 1) a forum for all of us to share what does/does not work for each of us, 2) find reliable information based on the prevailing research (see the main site, all pages are cross linked with medical study references) and 3) improve medical awareness and public awareness (see brochures you can download and print, and DVD's which are FREE).

[TXPOTS]

As a patient with POTS, the biggest obstacle I have come across is lack of knowledge of the disease by the medical community. I live in Houston. We have one of the largest, most renowned medical centers in the county. How many POTS specialists are there? Zero. I was initially misdiagnosed and had to travel across the county to get a proper diagnosis which came over a year after my initial symptoms. I am a very classic, cut and dry POTS patient (poster girl) who displayed typical symptoms many times during multiple physician appointments and hospitalizations. My husband and I work in the medical profession and have relentlessly tried to encourage electrophysiologists in the area to learn more about the disease. I find physicians very insecure about treating a disease they know little about. I don't think POTS is that uncommon if 1/100 teenagers becomes afflicted with POTS. I believe there are more patients out there that have this condition, but do not have a proper diagnosis. As awareness in the medical community increases, I believe we will start to get better treatment and generate more interest.

[Mary P]

This is exactly what I was thinking when I couldn't sleep the other night. I was even thinking that it would be an organization I could donate to every year, as with cancer, heart, Parkinsons, etc, perhaps even leave something to after my death. Even churches look for bequests in a will. (Don't know if bequest is the right word). Perhaps if we were to accepted as part of another established charity, it could be Parkinsons or MSA or some other organization whose supporters also have some sort of neurological condition.

[tilly]

Hi Mighty mouse .. yes i suppose this was partly my question (does dinet have someone to lobby support campaigne for them )!!!..

i was intested to see if it was possible to get dinets profile raied, by way of any awards Michelle could be nominated for, for her work to society, raising awarness and supporting others with rare diseases!!... (maybe somthing Like this) .. this would inturn raise public profile ... (from a campaigninng strategy point of veiw ) .. marketing dinet in a way !!,

I know exactly what you say that(it all costs) and i understand and appreciate this ... I can see the vast amount of effort that has been applied to this mammoth task of building up all of this valuable information and i know that most including other charities would go straight to dinet for furhter informaiton and for this reason i think it only just and fair that some sort of public recognition is deserved, again hence raising the profile of dinet ..

I think it would be good for dinet to affiliate to our charity here becasue, goals that dinet wanted to acheive this year was to educate the genral population and develope the lists of physicains that treat pots world wide ... affiliated would (just basically make us allies) ...

thanks tilly x

[Michelle Sawicki]

Hello everyone,

Nina stated DINET's goals well. The DINET site was created out of complete frustration with how little information was out there regarding orthostatic intolerance. My goal was to get the available research in the hands of patients and also to provide support and networking, such as the Meet Others Program and forum do. I am in grad school now and my time is extremely limited. Many of you have expressed some really great ideas here. Have you thought of taking the first steps to see your dreams fulfilled? I agree that someone needs to do this. Why not you?

Michelle Sawicki