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!

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.


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!

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." 


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


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)"


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!