Wednesday, November 16, 2011

Fresh Look and Fresh Outlook with Dr. Brad Tinkle

Hey, everyone, it sure has been a while! I have been so very busy this summer, but am back in action with the blog now, and hopefully will have some good medical news soon, too.

As you can see, I have done a complete revamp of the website, which I hope you find to be user-friendly and full of the information you crave. Please take a peek around and check it out. In addition to being able to subscribe via email to my posts (I just send you an email when I post a new piece), I have joined the modern world and started tweeting. On the right-side of the blog you can click the link and follow my Twitter page.

I have some exciting news to share, which I hope leads to a better treatment plan for me - or at least gives me some new ideas to run with. Ready for it? (I know you are riddled with curiosity and excitement, ha!)

Drumroll, please...

I have moved to Columbus, Ohio (oh, the things we do for love!), and that means I am only a two-and-a-half hour drive away from the renowned geneticist and author Dr. Brad Tinkle! (Ahh!!!) Yes, as you can tell, I am really thrilled about this. Even more exciting, I get to have a consult with him on Friday of this week. I am really nervous about this, as nervous as I get before every major consult, and also feeling a bit overwhelmed since Dr. Brad tends to be known as a rockstar in the EDS world, but hoping that I walk away with some new tools and ideas. It would also be really nice if he could tell me anything, anything at all, about what might be causing the horrific flank pain I have. I will give you all the details as soon as I get back from the appointment - send me some good vibes!

I have so much to tell you all, but not today. I have to get all of my stuff together for the appointment and also have to work on my Thanksgiving Turkey Rescue project. Until next time, I hope you are having an amazing autumn, that your pain is manageable, and that you are filling your lives with love.

xo dani

Sunday, July 10, 2011

Smiles and Pajamas

Hi, friends! Sorry for the break in posts, it has been a very busy few months. I have lots of updates and posts I am working on and will get them up soon, but until then I may just post a few random things. Today's randomness: zebra pajamas. Target (United States) currently is carrying these adorable (and ridiculous!) zebra PJs by Nick and Nora. I think they are the perfect addition to your collection of lounge clothes. They are comfy and cool for the summer, feature spaghetti strap tops and capri bottoms and weren't too expensive...around $20. For all of the female zebras that follow the blog, enjoy!


Note: I normally wear a women's (not junior's) size small or medium. These run a little large, so I opted for small. I have washed and dried them, they did shrink a bit, and now they fit perfect. This is nice, as they will hopefully fit all sorts of body sizes and shapes - they went all the way up to XL. I buy a lot of second-hand clothes and frequent the vintage/funky thrift stores, but pajamas are something I buy at regular stores, so these were a fun find.


Hope you are enjoying your summer and having a blast taking in the sunshine and warmth! Lots of love, hugs and light to you all.

xo
dani

Tuesday, June 21, 2011

Natural Treatment for POTS

One of the sites I really like for all things natural, NaturalNews, posted a great article today about Postural Orthostatic Tachycardia Syndrome and treating it with exercise. While, in my opinion, this article is specifically for those with stand-alone POTS and not POTS secondary to EDS, we can all take the advice from it. We can work within our limits (which may be higher than we believe them to be), and find ways to get exercise, which according to the article and other information I have read/heard, is the key to helping fight the syndrome; at the same time, we EDSers must be mindful of our bodies and joints.

While those of us with POTS secondary to EDS are usually thought of as having POTS because of our stretchy blood vessels, and this isn't going to fix us at a genetic level, I do think it would be beneficial to us and help relieve some of the symptoms, even if just temporarily. I have had several doctors tell me this, and also heard it at the conference I went to. The article also mentions that an exercise regime must be done indefinitely to keep symptoms at bay.

I am in the healing process from having tubes surgically removed from my ears, which means I will be able to get back to the pool again and hopefully that will help some of the POTS symptoms (along with the beta blockers I am now taking). I will have to find ways to workout in the pool that won't hurt me, as my shoulders and knees can't take much these days, but even grabbing a kickboard and just moving to get my heart rate up should help. There is a great bike/walking/etc. trail by the house I am moving to, so that will help, too. And, of course, keeping my body full of fluids, mainly water and some coconut water, along with lots of salt, is always helpful.

I am happy there is a positive article being circulated about POTS and natural treatments. Hope you enjoy!


Natural Cure Discovered for Debilitating Heart Syndrome POTS
Tuesday, June 21, 2011 by: S. L. Baker, features writer

(NaturalNews) Imagine simply standing up and feeling your heart speed up more than 30 beats a minute -- sometimes it races well over 120 beats a minutes. You also have heart palpitations out the blue and low stroke volume (the amount of blood your heart pumps with each blood). Even the amount of blood in your body is too low.

These are the symptoms of Postural Orthostatic Tachycardia Syndrome (POTS) -- dubbed "The Grinch Syndrome" because the majority of patients have a heart that is literally, to use Dr. Seuss' description of the Grinch's heart, "two sizes too small." POTS affects about 500,000 people in the U.S., primarily young women.

And while it isn't life-threatening, it can destroy the quality of a person's life and cause substantial disability by bringing on symptoms such as dizziness, lightheadedness, fatigue, inability to stand for prolonged periods of time (chronic orthostatic intolerance) and fainting.

But now there's evidence POTS can be cured without drugs or surgery, according to research just published in Hypertension: Journal of the American Medical Association. It isn't the easiest "prescription" for many POTS sufferers but knowing they can be cured may be enough to get them started on this natural path to total healing. The treatment? Regular exercise.

"The exercise training program is a resounding success in the treatment of POTS," Benjamin Levine, M.D., senior study author and director at the Institute for Exercise and Environmental Medicine at Texas Health Presbyterian Dallas, said in a statement to the media.

As anyone with POTS knows, the condition can cause such dizziness and fatigue that exercise can seem downright impossible. But the researchers figured out a way to help POTS sufferers begin exercising safely.

"The unique component is to start training in a recumbent (semi-reclining) position, which is important to those who can't tolerant standing. This strategy avoids the upright position that produces symptoms. We don't even let patients stand up to exercise for one or even two months," explained Levine who is also professor of medicine and cardiology and distinguished professorship in exercise science at the University of Texas Southwestern Medical Center at Dallas. "However, to maintain the benefits these patients will need to incorporate the training program into their everyday lives indefinitely."

There are a variety of recumbent or sitting exercises include cycling with a recumbent bike, rowing and swimming. Dr. Levine and his research team recommend exercise training for POTS patients that progressively increases in intensity, frequency and duration. The training regime, they said, should start with 30 to 45 minute sessions, two to four times per week. Eventually, patients work up to exercising five to six hours each week and they are encouraged to exercise upright when they are able to.

For the recent study, the scientists worked with 18 women (average age 27) and one man who completed a double-blind drug trial. The POTS sufferers were randomized to receive either the beta blocker propranolol, commonly prescribed for their heart condition, or a placebo for four weeks. After that time period, the research subjects participated three months of exercise training. There was also a control group of 15 non-POTS healthy participants who participated in the study.

The results of the study showed that all POTS patients who completed the exercise training showed improvement in physical function scores. What's more 95 percent of them showed improvement in their ability to function socially.

Every single POTS patient who completed the exercise regime showed an improvement in heart rate responses and over half - 53 percent - were actually "cured" of their POTS. That means their change in heart rate with standing no longer met the diagnostic criteria for the syndrome.

More good news for POTS sufferers: aldosterone-to-renin ratio (the regulation of sodium balance, fluid volume and blood pressure) has long been known to be low in people with POTS and the standard drug therapy given these people does nothing to help. But not so with the all-natural exercise regime -- the aldosterone-to-renin ration, which plays a critical role in how the body handles changes to blood circulation during prolonged standing, showed a dramatic increase in the POTS patients who worked out regularly.

The researchers' analyses also showed the group receiving beta blocker drugs showed no change in social function scores and very few patients taking the drugs improved their physical function scores at all.

"Exercise training is superior to the beta blocker in restoring upright blood circulation, improving kidney function and dramatically improving quality of life," Qi Fu, M.D., Ph.D., study first-author and assistant professor of internal medicine and cardiology at the University of Texas Southwestern Medical Center, concluded in the statement to the media.

Wednesday, June 8, 2011

Easy to Read Blood Pressure Chart

I came across this blood pressure chart a while back and I think you all would like it. For those of you with POTS, especially those just diagnosed, it makes understanding changes in blood pressure a bit easier. Hope it helps!

Click here to view full page image.


xo
dani

Wednesday, June 1, 2011

Yoga for Ehlers-Danlos Syndrome

Hey, friends. Hope you are having a nice day! I am very excited about my topic today, so without further adieu...

I have shied away from doing yoga my entire life. The few times I have tried pilates I have dislocated my shoulders and that was enough to keep me far away from anything similar. I also was under the impression that yoga would be "bad" for someone with Ehlers-Danlos Syndrome, as it would stretch things too much. Doctors had cautioned me from doing anything to over-stretch my body and I assumed yoga would be suspect; that is, until I met my current yoga instructor about a year ago.


"A moving body is a healthy body. Once you stop moving, it is harder to start moving again," I can hear Kathy saying to our small class. Out of the five people in my class, I am by far the youngest, by decades - I would guess the average age to be about 70. "The goal is not to stretch ourselves into pretzels, but to be able to keep doing the things we need, like get in and out of the car." Alright! Exactly what I need!


I decided yoga was a goal of mine when my back and flank pain became so persistent that I was in tears everyday. The more I sat in bed because my back was hurting, the more my back hurt! Of course! Well, I can't help sitting in bed a lot of the time, as is the case with a body that gives out on me all of the time. However, I can try to keep in shape in any way that I can. I can't run a marathon. Most days I can barely make it up and down my street, and some days that just isn't going to happen. But - I can sit in a chair for a few minutes, stand for a few minutes (unless my POTS is bothering me) and even bend for a few minutes - and that is all I need for a complete yoga workout to stretch my body in the normal range of motion, and most importantly, work on strengthening and toning. I especially need a strong core, which will help keep my back working properly. I do not do yoga to gain flexibility, I do it to keep the mobility I have and to help relieve some mental and physical pain. I do have to say, the yoga hasn't helped my flank pain one bit, but it has helped other parts of my body feel a little better, and mentally it has helped a bunch.


When I searched for a class, I came across The Yoga Center in Reno, NV, but I am sure there are similar facilities across the country. My class, Yoga for Every Body, is an "introductory level class for those with special health concerns such as injuries, arthritis, joint replacements, difficulty getting to the floor or re-entering an exercise program. The entire class can be done in a chair.

My left hip is super flexible still, 
but my right one is in constant pain and less-flexible.
To work with this, I use a block to stretch it just a bit,
but not over-stretch it, making sure to not hurt it more.
"Hatha Yoga is a system of exercises which originated in India several thousand years ago. This class includes postures, stretching, diaphragmatic breathing and relaxation. Its purpose is to bring balance, relaxation, and calmness to the individual. Regular practice can give a person increased vitality and an ongoing sense of well being." 
 

Kathy Randolph, my instructor, is a Certified Yoga for the Special Child Practitioner. If you are interested in finding a yoga class yourself, I would highly recommend searching for someone who has been certified in this technique, or someone who does yoga for people with disabilities, or both. She has a great understanding of what special bodies can handle.


I have only attended class when I am able to drive the hour-and-a-half in the car. The rest of the time, I just practice at home. I do find that the classes keep me focused and the direction the instructor provides is extremely useful. I highly recommend attending classes at least some of the time. The type of yoga I have been practicing is Integral Yoga Hatha, and I have been learning ways to do the poses that don't overstretch my body or put stress on joints that are bothering me. The great thing about yoga is there a ton of different ways to do one pose. There are ways to do everything while sitting in a chair or sitting on the ground, so even people who are really limited in mobility can still reap the benefits. We choose the "easy" or least aggressive poses and only hold them for short periods of time. And, we all work within our abilities, each person in the class doing different versions of the poses to allow for the best workout for our own individual needs.

At home, the books I use that were recommended by Kathy are Integral Yoga Hatha by Sri Swami Satchidananda and the instruction book Integral Yoga Hatha for Beginners (Revised)
that goes along with it (purchased separately).


I have to say, I am thrilled to have taken up yoga, and I hope that this provides you all with some insight. Of course, each of us are different, but this may be beneficial to some of you. As always, I am not a doctor and I am not giving this as medical advice.

Now...back to my vacation!
xo
dani


Tuesday, May 31, 2011

What to Do When Your Friend Has an Invisible Illness

Hey, friends! I wanted to do one more quick post as EDS Awareness Month comes to a close; I found this video to be quite accurate and wanted to share. It is the perfect piece to pass along to friends and family.


Hope you've enjoyed your month and that you are all in good spirits and low pain. I am still having a blast on my vacation, and enjoying lots of laughter and love, both of which are the best treatments I've found for EDS and POTS. :)

Lots of love to you!
xo
dani

Tuesday, May 24, 2011

May is EDS Awareness Month in Ohio! Sweet Treat!

As you all know, EDS Awareness Month is upon us, and my goal of getting Nevada to pass a Proclamation came to fruition this May. You might not know, however, that I have a connection to Ohio, as well. Girlfriend lives in Columbus, OH and I have had my eyes on the prize of a Proclamation in that state, too. I went to work a few weeks ago and just received the great news - May is now Ehlers-Danlos Syndrome Awareness Month in Ohio for 2011! Yippee! This is great news, especially since I am spending May and June in Ohio on vacation!

Ohio Proclamation, photo taken in Ohio!


The text of the Proclamation is not currently on the state's website, but I will post a link when it is. It is the same text as the Nevada Proclamation. Visit here for more info on why Proclamations are so important.

xo
dani

Monday, May 23, 2011

Random EDS Posters Around Northern Nevada

The rest of the EDS posters and flyers found random homes in the Silver State...

I got 2 sizes: 11"x17" and 13"x19"


 Dr. Killeen's office stuck one up, 
and I had too much fun while I was there. Lol!


 Got one up at City Hall in Sparks.


 I was able to stick some flyers on the tables 
at this random doctors' office.


Jolt-N-Java is a local coffee place.


I got one up at the sign-in area of the local 
Children's Cabinet & Wilbur D. May Youth Center, 
which is basically a safe-haven for needy and at-risk kids and families. 


 süp is a local restaurant that serves a variety of clientele, 
from upper class to the local hipster crowd. Not only did a poster go up
at the front door, but it went right next to a poster that listed 
my friend's musical performance.


Freeman's Natural Hotdogs serves vegan and 
non-vegan hotdogs. And also now has an EDS 
poster at eye-level by the front door. 
The blue is very vivid when walking in. Perfect!


 Dr. Pat and Krista Colletti's Pediatrics office posted some flyers.


 A poster went up on the bulletin board of the local Raley's grocery store.


And Evelyn Mount Northeast Community Center stuck a few up as well.

Hope your day is lovely and bright!
xo
dani

Saturday, May 21, 2011

Got an Article in the Nevada Appeal

A local paper, the Nevada Appeal, did an online piece on EDS after receiving my press release on May being Ehlers-Danlos Awareness Month in the State of Nevada. How exciting!



"This month is “Ehlers-Danlos Syndrome Awareness Month” in Nevada, thanks to a proclamation by Gov. Brian Sandoval.

The proclamation comes as due relief to Nevadans who struggle through each day coping with the effects of EDS. Sandoval agreed to shine a spot light on the disease after working with Sparks resident and EDS sufferer Danielle Davis, who pushed for state recognition.

EDS causes a person's connective tissues at the joints to become very loose and unstable, causing painful dislocations. Skin easily bruises, scars, and tears, and arteries and organs easily rupture.

Despite its relative obscurity, a conservative estimate is that one in every 5,000 people have EDS. There has been little research leading to successful treatments, but Davis hopes that the tide is turning as more people learn about EDS.

“Beautiful spring weather presents lots of opportunities for people of all ages to get out into their communities and raise awareness and hope,” Davis said, “by holding fundraising events, getting permission to hang EDS posters in doctors' offices, hospitals, and local hangouts, handing out brochures to friends, family and the public, and whatever else the imagination inspires.”

Depending on the individual mutation, the severity of EDS can vary from mild to life-threatening. With Nevada's population estimated around 2,500,000, there are likely more than 500 people with the syndrome living in the Silver State.

Many with EDS are not diagnosed until well into adulthood and, in certain cases, not until after they die from its complications. Serious and often fatal complications typically occur in a person's 30s.

For more information on EDS, including how to support important and promising research for treatments and cures, go online to DanielleDavisEDS.com and www.ehlersdanlosnetwork.org/index.html." 

xo
dani

Friday, May 20, 2011

Washoe County Schools Approve EDS Posters!

Part of my goal for Ehlers-Danlos Awareness Month was to get posters put up at the schools in the area. In order to put a flyer or poster up at any school in the district, the school district's communications office must approve them first. My goal was also to get them up as soon as possible, since some of the schools would only be in session for May and part of June; though, some are year-round. Luckily, a very nice guy in the communications department helped me out and quickly pushed the posters through the approval process.

Just to give you an idea, there is only one county in the area where I live. All of Reno, Sparks and the surrounding areas are all part of Washoe County, NV, which makes them all part of the Washoe County School District. I got approval to put the EDS posters up, the ones I spoke of in the last post, in any and all of the schools - elementary, middle and high schools!

I was going on vacation for most of May, so I had just a couple of days to complete this task, and all of this was done out-of-pocket, so I was only able to do what was within my means. In the elementary schools, I stuck the posters up in the office area or on the parents' bulletin board, in the middle schools I tried to stick them in the office or clinics, and in the high schools they went up in the halls and in the student relations offices. It was a lot of work, took funds that I normally use toward medical care, and wore me out/was hard on my body, but I am happy with what I was able to do. These are schools in the area I grew up in, which made it even more special. Anyway, I wanted to share! Happy EDS Awareness Month!!

 Yvonne Shaw Middle School

Spanish Springs High School

 Miguel Sepulveda Elementary School

 Edward C. Reed High School

 Jerry Whitehead Elementary School

 Lou Mendive Middle School

 Diedrichsen Elementary School

Marvin Moss Elementary School

 Earl Wooster High School

Reno High School

 Lena Juniper Elementary School

 George L. Dilworth Middle School

 Greenbrae Elementary School

Edward W. Van Gorder Elementary School

xo
dani

Tuesday, May 3, 2011

Open Letter to Those Without Ehlers-Danlos Syndrome

An EDSer friend shared this with me, and in honor of EDS Awareness Month I wanted to pass it along. The original author is unknown, but it is a perfect way to describe our lives to those without EDS. Perhaps, you might want to send it to some of your friends and family, as well. I know in my circle, I have a few people that I think really should read it. I don't know if they will, but it is worth a shot. Good luck friends, zebras, spoonies - we are just just part of one big family on Mother Earth, one big family with really messed up collagen. ;)

Photo by Dani Davis & Designs By Rachael Brady
"Open Letter to Those Without Ehlers-Danlos Syndrome;

Having Ehlers Danlos Syndrome means that many things change. Just because you can't see the changes doesn't mean they aren't real.

Most people don't understand much about this disability/disease and its effects, and of those that think they know many are actually misinformed. In the spirit of informing those who wish to understand...

... These are the things that I would like you to understand about me before you judge me...

I am scared. I don't know what the future holds for me. Will I end up in a wheelchair or will I be one of the lucky ones. If you find me being quiet and reflective, please don't think I am upset with you. I am trying to sort out my fears.

I am angry. EDS has taken so much away from me. I can no longer do many of things I enjoy doing. I sometimes have difficulty just completing simple tasks. If I appear angry please understand it is EDS I am angry with, not you.

Please understand that having EDS doesn't mean I'm not still a human being. I have to spend most of my day being very careful about what I do, and if you visit I might not seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school, work and my family and friends etc, and most of the time I'd still like to hear you talk about yours too.

Please don't assume you know what is best for me. EDS has affected my joints and such, not my mind. I am capable of making my own decisions. If I make the wrong decision, it is I who has to deal with the consequences. I still want to be part of the "gang." Please continue to invite me to participate in activities. I'll decide if I am capable of it. You may think you are being considerate by not inviting me to go ice-skating with everyone else, but it hurts when you exclude me. Maybe I can't skate with everyone else but I can bring the hot chocolate and watch.

Please don't tell me you know how I feel. You don't. Don't offer me sympathy; I don't want your pity. But do offer me support and understanding, which I appreciate. I know sometimes I look perfectly healthy, but looks can be deceiving. Please understand that I am dealing with invisible pain and a lot of fatigue. Even on a good day I feel like you do when you have the flu (tired, achy and sore). Please keep that in mind.

Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years (EDS is genetic, this means I have had it since birth (even if I was only diagnosed recently, I have been suffering from this since I was born)). I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. I may be tired. I may be in pain. I may be sicker that ever. Please, don't say, "Oh, you're sounding better!" I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.

Please don't tell me how “Auntie Mary” cured her joint problems by drinking vinegar or any other supposed remedy. If you want to suggest a cure to me, please don't. It's not because I don't appreciate the thought; and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. There is NO cure for EDS (and until they find the exact genes causing it and technology and medicine get to a point where something can be done about this, there will be no cure), only some of my symptoms and pain can be treated. If there was something that helped, then myself and other suffers would know about it (this is part of the reason I am a member of the online communities I am a member of). This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with similar and different chronic illnesses and disabilities, and if something worked we would know about it. If after reading this, you still want to suggest a cure, then do it if you must. Preferably in writing and accompanied by the scientific papers that prove it works. But don't expect me to rush out and try it. I might not even reply. If I haven't had it or something like it suggested before, and it sounds reasonable, I'll probably take what you said and discuss it with my doctor.

I want you to know that the pain and instability etc from EDS moves around. Please don't attack me when I'm worse by saying, “But you did it before!”. If you want me to do something, ask if I can and I'll tell you. Just because I climbed the stairs yesterday (or an hour ago) doesn't mean I can do it today (or in another hour). Yesterday (or earlier) my shoulder was throbbing; today (now) it is my knee, who knows what it will be tomorrow (or later). Also understand that being able to stand up for five minutes, doesn't necessarily mean that I can stand up for ten minutes, or an hour. It's quite likely that doing those five minutes has exhausted my resources and I'll need to recover - imagine an athlete after a race. They couldn't repeat that feat right away either. Please repeat the above paragraph substituting, "sitting up", "walking", "thinking", "being sociable" and so on ... it applies to EVERYTHING that I do.Similarly, EDS and the symptoms of it may vary suddenly, meaning I may need to cancel an invitation at the last minute, if this happens please do not take it personally.

Please understand that "getting out and doing things" does not make me feel better, and can often make me worse. EDS may cause a secondary/reactive depression (wouldn't you get depressed occasionally if you had a body that could change suddenly for no reason, caused you pain 24/7 and could spontaneously rearrange itself through no fault of you own) but they are not caused by depression. Telling me that I need some fresh air and exercise is not correct and probably not appreciated - if I could possibly do it then, I would.

Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm doing something else more exciting. EDS does not forgive its victims easily.

Please understand that I can't spend all of my energy trying to get well from EDS; it is incurable (and genetic, so unless I can change my gene’s I cannot change my disease/disorder). With a short-term illness like the flu, you can afford to put life on hold for a week or two while you get well. But an important part of having a chronic illness or disability like EDS is coming to the realization that you have to spend energy on having a life while you're sick/disabled. This doesn't mean I'm not trying to get better. It doesn't mean I've given up. It's just how life is when you're dealing with EDS or any chronic illness/disability.

As you can see EDS really sucks...

Finally, please remember that I am the same person I was before I was diagnosed with (started getting symptoms of) this; EDS doesn't change the heart and soul. I still laugh, I still cry. I still love and I still hate. I am me, I am not my disease. Please continue to love me just as you did before. I need lots of love, understanding, support and hugs, just like you.

But most importantly, I need you to understand me.

Written by Michael (aka Deaderpool)"


xo
dani

Sunday, May 1, 2011

May EDS Awareness Month: How to Help!

My darling friends and family, Happy Ehlers-Danlos Awarenss Month! This post is dedicated to ways we can all help those with EDS by doing things like raising awareness and helping with funding.


Yesterday's exciting post about Nevada's 2011 Proclamation included info on how to work on getting a Proclamation passed in your state. The first step would be to find out if there is already a Proclamation in your state. You can leave me a comment below with your state and I will let you know. If you have other stuff to discuss, please leave it in a separate comment, it will make it easier for others to see. Then, follow the simple steps outlined yesterday.

There are also some really great posters that were designed and made for EDSNC. They are copyrighted, but we can copy and print them in order to pass them out and spread awareness. The best way to do this would be to get the image from here, download it (save it to your computer) and make copies. You could make letter-sized copies or even poster-sized glossy copies. If you need hi-res images, you may need to ask EDSNC how to get them. You also may need to "like" them on their Facebook page in order to view the images. Take the images to Kinko's to make bulk copies. And, color copies always make a bigger impact than black-and-white.

Property of EDSNC

Property of EDSNC

 Property of EDSNC 

 Property of EDSNC

Where can you leave the copies/posters/flyers? (Bring a copy of your state's Proc with you, if you have one!)
  • Ask your doctors' offices or hospitals if they would be willing to post them in the doc's rooms or the lobbies. Explain to them why this would help.
  • Go to other doctor's offices around your town, even if you aren't a patient, and talk about it with them. Maybe you can even leave copies of the flyers (the general one) in their lobby. 
  • Check with Physical Therapy offices.
  • Your local coffeeshops, delis and grocery stores often have bulletin boards, try there.
  • Talk to friends and family about spreading them around.
  • Some places of employment will allow them to be posted or passed around breakrooms.
  • Pediatrician's offices would be a great place.
  • Try local schools, daycares, preschools, etc.
  • Anywhere else! Just be sure to get permission before posting something.
Find your local newspapers here, if you are interested in submitting an article, informing them about EDS, etc. Or try contacting your local TV stations to run a story on EDS.

Social media is a great way to get the word out about Ehlers-Danlos Syndrome, so feel free to blog about EDS, write a note and tag your friends on Facebook, or even tweet about donating to EDSNC or ENDF. I know personally, everyone on my Facebook page has heard of EDS from me, and they are probably sick of hearing about it. I am going to take the other approaches this year. But, if you haven't spread the word via a social networking site, think about posting one quick message a day about EDS, one for every day of the month. Find a great list of 31 Facts about EDS here. ("Like" them to view it. They are great tidbits!) If you don't have a Facebook account, you could always just write a heartfelt email to your friends and family telling them about EDS, what troubles you face, what troubles others face, and asking them to support research by making a small donation.

Get creative! Feel free to comment below if you have other ideas to share. A lot of people read this site, and there might be something I haven't thought of! You could even be as goofy as me and write all over your car. I hope at least one person wonders about what I wrote and looks it up online! ;)

The other part to EDS Awareness Month is fundraising. There are a few research projects going on right now, and you could ask for donations, hold a bake sale, or have the kids manage a lemonade stand one warm weekend to help raise funds. Any dollar raised could help save the life of you or someone you love.

Any money donated to EDS Network C.A.R.E.S. will be used for one of the two research projects going on right now. Literally, every dollar will make a difference. It can be hard to find the right words to ask people for money, so they have a great template/letter to help you out with this. You could even just email it around to your family, friends or coworkers (shh, don't tell your boss I said that!).

Ehlers-Danlos Network C.A.R.E.S (EDSNC)
  • Donate to Ehlers-Danlos Network Cares
  • Templates to ask for donations.
  • Store to purchase EDS swag and promote awareness.
  • Info is currently on the homepage about the second (and newest) research project, and there is info about all current research here.

The Ehlers-Danlos National Foundation currently holds conferences once a year where EDSers are able to meet others like them and attend group lectures on all sorts of EDS topics. I went to the 2010 Conference in Baltimore and it made a big impact on me. Getting to meet one of my EDS friends in person was such a relief, a treat, and an inspiration, and learning about treatment options I had never heard of was also very helpful. EDNF also provides a host of information on their website about EDS and newsworthy items.

EDNF (Ehlers-Danlos National Foundation)
  • Donate to EDNF
  • EDNF store to purchase emergency wallet cards.

It is YOUR month - get involved! :) Help raise awareness, bring about new treatments, raise some money and maybe help find some sort of a cure for this not-as-rare-as-most-people-think "invisible" disease! Good luck! Let me know how it goes for you!

xoxo
dani