Wednesday, March 27, 2013

What Can I Do for May Ehlers-Danlos Syndrome Awareness Month?

A question that comes up a lot when talking about EDS Awareness Month is, "how can I help?" Well, I am here to tell you that any bit of effort you put forth, big or small, will help increase Ehlers-Danlos Syndrome Awareness. Whether it is talking to a friend about what your average day is like living with an invisible illness, or creating a giant event in the community, every single action counts. I am an activist at heart, so getting the word out about things is in my blood. If there is something that needs to be aired, I have no problem standing up and speaking my mind (though, I have terrible social anxiety, so panic attacks can ensue!), holding a sign in protest, or writing a blog post, newspaper entry, or spreading the message via social media. Because of this, I have some tips for you, my readers, for things you can do this year to help all of us. In addition, later this week, I will be writing a post on what I am doing for EDS Awareness Month this year -- and it is big and exciting and involves art!


Proclamations:

First, you could work on getting the Governor of your state to pass a proclamation making May EDS Awareness Month if there isn't already one in place. To find out if there is a proclamation already, check with the EDS Proclamation Facebook Group, as they have all the current info for 2013. You need a Facebook account, then you need to become a member of the group by "asking to join." If you find out there isn't a proclamation in your state, go to your Governor's website and find the link to request a proclamation. For example, Ohio's proclamations are requested through the Governor's contact page. There is a drop-down menu and you click "Proclamations" and then add the text for your state-specific proclamation and your contact information. They will typically follow up with you a few weeks later. Feel free to use the templates I provided and tweak them to represent your state. Also, don't contact Nevada, Ohio, or Oregon with a request - we already have a proclamation for 2013. You are welcome to mail a thank-you letter, though!

Templates: 
Proclamations Requests, Proclamation Text, Thank-You Letters


Proclamations I got passed:
2011: Nevada, Ohio
2010: Nevada




Pass out posters and flyers:

Posters are an easy and effective way to spread EDS Awareness. There are all sorts of places you can try to put up posters. Don't forget to bring supplies with you: tape, scissors, stapler and staples, and pushpins are great to carry in a bag with you! Also, you can bring a copy of the state's proclamation, if there is one, to show the business/organization, or you can bring some info about EDS to show them, like an EDNF MRG (print this, two-sided, & fold it in half - it provides a great overview of EDS)!


There are 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 an office store to make bulk copies. And, color copies always make a bigger impact than black-and-white. You can make an 11"x17" color copy for 99 cents at Office Max -- it seems to be the perfect size to plaster all over.





Where can you leave the 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.
  • City or Town Halls.
  • Youth facilities, low-income and at-risk youth centers.
  • Community centers.
  • Churches.
  • Pools.
  • Skating rinks.
  • Anywhere else! Just be sure to get permission before posting something.
  • SCHOOLS: Schools are a great place to put up posters. Elementary schools have boards by the office that the parents see, middle and high schools usually have boards up in the halls that the students see, and college campuses have multiple areas that posters would be appropriate. Getting permission from School Districts is a must, so please read the post I did on getting school board approval first. Usually contacting the communications department is a good start. 

  • GENETICS CLINICSEDS Network Cares is asking that everyone try to get 3 posters put up in their local genetics clinic for May EDS Awareness Month. Please call your Genetic doctor or clinic in your area and ask them if they would be willing to put these EDS posters up in their office. If they say yes, ask them how many sets of posters they would like. Each poster is 11"x17". Please send the doctor's name, address, and phone number to EDSPosters@gmail.com. 






Speak at a local venue:

Are you a member of a local church, Girl or Boy Scout Troop (member or leader), knitting club, sports team, or any other community gathering? If so, it might provide the perfect avenue to take some time to talk to your peers about Ehlers-Danlos Syndrome. The first step would be to talk to the organizer of that group and ask if you can have some floor time at your May meeting/event/competition (any month works if you can't make May happen!), and gather up some talking points. Just be candid. You can make small copies of posters or flyers to pass out, if you choose. You can pass out MRGs (Medical Resource Guides). You can have a very intimate conversation, or just gloss over a few major symptoms. If you are school-aged, what about asking your teacher if you could write an essay and read it in front of your english class for extra credit? Whatever you are comfortable with, make it work for you and your setting.

For example, while I don't attend a church, many of my readers do. You can talk to your Pastor and ask them if they would allow you to talk to the congregation for a few minutes after your Sunday service. You can just tell the folks about Ehlers-Danlos Syndrome, why it is important to get diagnosed, what it is like to live with EDS or love someone with EDS, what some of the symptoms are, and explain to them that May is EDS Month Internationally (though not officially recognized everywhere).

While public speaking can be very difficult for some people, myself included, it really can make a world of difference because it allows you to educate a large group of people all at once. Can you imagine if 10, 100, or 1,000 people who didn't know about EDS, all learned about it in 5 minutes just because you were able to talk to them? Knowledge is power and it spreads like wildfire. Don't be afraid to try speaking.
"Speak your mind even if your voice shakes."
- Maggie Kuhn

If you'd like, download EDNF's General EDS Medical Resource Guides (MRG). Don't forget, they are double-sided. If you print them at home, just print on both sides of the paper and then fold in half. It presents like a leaflet and is a great tool to pass out to people when you are talking to them about Ehlers-Danlos Syndrome.







Raise Funds for New EDNF EDS Clinic:

Seriously, a center for Ehlers-Danlos Syndrome! An entire clinic for EDSers...who doesn't want that?! This still gets me giddy every time I think about it!

Photo from EDNF.org
"EDNF's goal: Realizing the dream of physician training, clinical advancement, and research. EDNF seeks your support in endowing a facility that will be the world center for EDS, from physician training and clinical practices to scientific research. The opportunities are boundless; you can help the lives of children and families by advancing the progress towards solving a genetic disorder that affects the fundamental tissue of the body. You have the chance to join us in this life-changing endeavor and improve our future, from site selection through scientific breakthroughs and beyond. This is just the beginning. Our dream doesn't end with one center: we envision a global network of centers working towards a cure"

Hold a bake sale to raise funds:
Check out the recipes!

 Vegan chocolate and vanilla cupcakes with vegan whipped cream, fruit, and cocoa powder.

Seriously, who doesn't like baked goods? Whether sweet or savory, food moves people. Have you seen Instagram, full of people obsessing over their plates? Food is great way to motivate people and a great way to make a few dollars in the name of EDS. Hold a bake sale at your work, school, church, or group/team, and donate the proceeds to EDNF's soon-to-come-to-fruition EDS Center. You can actually donate money specifically to this facility, not just to EDNF. How rad is that?! And, if I were raising funds, I would just make a note that the money had to go toward non-animal tested research or to other non-animal related expenses, like patient treatment, facility supplies, etc.

 





Decorate your car:

Choose to paint your car for the month of May, or get some bumper stickers or magnets. Your car is visible by many people each day, so why not spread the message as you drive?

Purchase a paint marker from a store like Target or an automotive store, or buy bumper stickers from Cafe Press or Zazzle.






Donate Dr. Brad Tinkle's book to your doctor(s):

Dr. Brad Tinkle's Joint Hypermobility Handbook - A Guide for the Issues & Management of Ehlers-Danlos Syndrome Hypermobility Type and the Hypermobility Syndrome is like the Bible for EDSers. It provides comprehensive information on Ehlers-Danlos Syndrome, diagnosis, treatments, etc. It has been the best reading material for an EDSer that I have come across. Plus, Dr. Brad, as he likes to be called, is my doctor and I love using him to help me spread the message about EDS. As you know, educating our doctors is one of the very most important things we can do to help ourselves. Most doctors have only read a paragraph or two about EDS in medical school and never thought about it again -- until they met us. We need to help educate the doctors so they can help treat us properly and so they can help get more people diagnosed. While it is known that about 1 in 20,000 people have EDS, we know it is closer to 1 in 5,000, but those others have yet to be diagnosed. Help them by helping your doctors.


Purchase Dr. Brad's book and give it as a gift to your doctor during the month of May, with a card explaining why you are giving it to him and how much you would love it if (s)he would become more informed. Present it in a way that it makes your doctor feel appreciated and respected, but also that you would like to help them learn a little more in-depth about what an EDSer experiences. Gift wrap (recycled is better!), a bow, and a nice card go a long way in presenting the information without coming across as a know-it-all or rude, even though you know more about your body than your doctor probably does!
Buy the book in the Life with EDS Store!



Contact your local newspapers or TV stations:

In order for news outlets to run a story, something must be newsworthy; there usually must be a local catch and even a local event. Without those, there isn't much for the outlet to write or run a story on. Here is where you come in. If you can create something that has flare, it may be more likely to get coverage. For instance, if you are having a May EDS event, you can contact your media outlets to see if they will cover your event or interview you ahead of time. Just Google to find out the contact number and call the news desk (TV) or editor (newspaper). Alternatively, if you are savvy, you could write a press release and submit that via email or fax.

If you are not doing an actual event for May EDS Awareness Month, you can still try to get something in your local newspapers by writing a Letter to the Editor (LTTE). This is a great way to get Ehlers-Danlos Syndrome in the paper, and editors usually run all sorts of LTTE topics. It is very likely that your letter will end up in your local paper or online.

Template:
Letter to the Editor  
Example of letter that started as LTTE on Washington Times Communities

Article I got in the Nevada Appeal Online Edition in 2011:






Use social media to spread the word about EDS:


If you have accounts on Facebook and Twitter, a very simple and easy way to spread awareness is to dedicate your May feed to EDS. All you have to do is post one thing a day, for the whole month of May, and all of your friends & connections will learn a ton about Ehlers-Danlos Syndrome. If 31 days of EDS is too much for you, or you feel it would be overload on your friends, just pick one week or one day a week to post. If you blog, write a post about EDS. If you have a food blog, for instance, do a post on nutrition for EDSers. If you blog about crafting, how about a post on ways that your artwork helps you feel better? Even a quick tweet about donating to EDSNC or ENDF would help our cause.

Some things you could share on your profile:

Myths & Facts About EDS

Each day you could share one thing EDS; for instance, on May 1st you could post that "People with EDS may have done "party tricks" as kids, twisting themselves into pretzels," and just do one for each day of the month.

You could share links to donate to EDNF, EDSNC, EDS Support UK or any other EDS group.




 
Snail Mail "An Open Letter to those without Ehlers-Danlos Syndrome" to friends and family:


You may have come across this letter on my blog before, but it probably still holds true for you if you have Ehlers-Danlos Syndrome. Snail mail is way more personal than email, so you could print out a copy of the letter, include it in a card, and send it USPS in the month of May to those who you care about so they understand what it feels like to be YOU, living with EDS. To update, the author of the letter is Michael, aka Deaderpool, and I wanted to make sure to credit him. He has written a letter that universally holds true for most of us. If you don't want to snail mail it or hand it in person, email should still do the trick.

Print and mail:
An Open Letter to those without EDS






That's all I have for you. If you think of anything else, feel free to post your ideas below. So much love to all of you, and here's to the best May EDS Awareness Month yet!

xo
dani

Tuesday, March 26, 2013

Proclamations Make May 2013 EDS Awareness Month in Nevada, Ohio, & Oregon!

As you know by now, I strive to get proclamations passed each year by the Governors in states that hold a place in my heart. This year, I got to work early and now have official documents in hand from three states: Nevada, Ohio, and Oregon. Nevada's Governor Sandoval, in my home state, passed the proclamation making May 2013 Ehlers-Danlos Syndrome Awareness Month for the fourth year in a row. Ohio's Governor Kasich passed our EDS Awareness Proclamation for the third year in a row, in the state I now reside. And, for the first time ever, Governor Kitzhaber of Oregon passed the EDS Awareness Proclamation in the beautiful Pacific Northwest! I dedicate the Oregon EDS Awareness Proclamation to my EDS bestie who lives in Oregon, Shellie, and her beautiful family. Tomorrow, I will post info on what you can do locally to help spread awareness and what activities you can organize or participate in where you live. Hope you all are well and having a low pain day! 

Nevada:



Ohio:
 

 
 Oregon:



 xo
dani

Friday, March 15, 2013

New EDS Group in Columbus, Ohio!



The Columbus EDS Support Group just had its first meeting in February. Being in a room with others who have Ehlers-Danlos Syndrome feels so wonderful. Surrounded by people who completely understand what we go through, we were able to share our own stories, compare symptoms, talk about treatments, and discuss increasing awareness in our community. It was empowering and humbling. To see if there is a group in your area, visit Chronic Pain Partners or EDNF.

For those of you in Columbus, Ohio, or the surrounding area, please check out the group's site to get information on our upcoming events and projects.



xoxo
dani

Thursday, March 14, 2013

From Needles to Scalpels...Renal Autotransplantation is a Go!

Acupuncture did not help my flank pain at all (on a side note, it did help my knee pain, but I found it to be uncomfortable and not-at-all relaxing, which was different from most people in the room who were fast asleep during treatments). After a month of needles, it was back to the drawing board. I talked with Urology Doc at The Cleveland Clinic, he confirmed my diagnosis of Loin-Pain Hematuria Syndrome, and we scheduled my renal autotransplantation surgery for August 1st. The surgery will be 6 hours, and I will be in the hospital for a week, then at home healing after that. I will blog about it all when the time comes. After the kidney surgery, we will plan the C1-C2 fusion for my cervical instability.



If you don't remember what LPHS is or you need a recap, along with a detailed explanation of the surgery, visit my other posts:



Hope you are enjoying March! Love and hugs!
Happy World Kidney Day! 

xo
dani