Make May Matter: How to Raise Awareness for Ehlers-Danlos

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May is an important month for me. Not only is it the month of my birth, but it is also Ehlers Danlos Awareness month. Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. The Ehlers-Danlos syndromes (EDS) are currently classified in a system of thirteen subtypes.

I have Hypermobile Ehlers Danlos Syndrome (hEDS).  The diagnosis of hypermobile EDS (hEDS) remains clinical; there is no molecular, genetic cause yet identified.

In order to help spread the word about EDS awareness, I wanted to create a list of ways people can get the word out this month, and really use this month to make a difference.

Here are some ideas:

  1. Use Twibbon to create a zebra print profile picture on Facebook! This is a quick and easy way to get the word out. Zebra print is the “awareness color” for Ehlers Danlos Syndrome. Click here to use Twibbon. image
  2. Participate in The Lemon Challenge! This is similar to The Ice Bucket Challenge for ALS. The concept is simple, and there is even a graphic for you to share with your 30 second clip. imageimage
  3. Go Live! Your Facebook friends get a notification whenever you go live. Create a short video of you discussing Ehlers Danlos Syndrome and why raising awareness matters to you. Make it fun!
  4. Share an infographic! These are easy to read informational images. The Ehlers Danlos Society is sharing one every day in May on their Facebook page. Like their page to see a daily post. image.jpeg
  5. Put up a poster! If you can get permission from your school, place of business/work, or local a public bulletin, go ahead and use it as a means to share. The Ehlers Danlos Society offers a free poster that you can print and display.
  6. Contact local media! This one is a little more difficult, but if you have the time, try reaching out to your school news, whoever writes your weekly work newsletters, or even a local news paper or news station and see if they would be willing to do an article/segment on EDS.
  7. Wear Stripes! The Ehlers Danlos Society is selling zebra merchandise to help raise funds for research into EDS. You can purchase EDS awareness merchandise here.  image
  8. Sell zebra ribbons to fundraise for EDS. If you want to raise money for EDS, consider printing zebra ribbons and selling them, or making zebra ribbons out of zebra craft ribbon to sell. image
  9. Do a 50/50 raffle! If you can talk to your school or workplace, see if they will allow you to arrange a 50/50 raffle to raise money for EDS! image
  10. Add a signature to your e-mails! If you routinely send e-mails, add a quick signature about EDS awareness. image
  11. Decorate your lawn! If you live on a busy street, consider putting up a homemade sign, zebra lawn ornaments, or painting “EDS Awareness” on your front lawn. image
  12. Have a conversation! The easiest way to spread awareness is to have a conversation with someone else. Spark a conversation with someone around you every day to try and get the word out. Tell a teacher, your hair stylist, the cashier at the grocery store, your friend, someone at a party, the new intern at the office…literally anyone who will listen. Tell them about EDS and your efforts to raise awareness.

I hope this gave you some ideas on how to make May a great month for EDS awareness. If you want more information on Ehlers-Danlos, please check out The Ehlers Danlos Society.

Thanks for reading!

Thinking About Plasma Donation? Good.

Thinking About Plasma Donation?

Good.

Woman donating blood in busy hospital donation bank

Today I went to donate blood plasma for the very first time. I have been in a bind for cash, with Shasta needing another bag of very expensive food (she’s got allergies, just like her Mom!) and a round of vaccinations. I was pretty hesitant about it. Donating whole blood in and of itself is very frightening to many, but I’m here to tell you that it wasn’t that bad! You are compensated for your time and you are doing a GREAT thing for those who need plasma donations.

Here’s what I can tell you about Plasma Donation:

  1. The first time you donate, you will have to arrive fairly early. There are a lot of regulations and requirements for donating plasma, including answering the same questions over and over again. The staff was very helpful in explaining the process and answering any and all questions I had, including the qualifications of the people working in the facility. I was informed that in my facility all of the people working in the lab had acquired a minimum of an EMT or an LPN education.
  2. You have to pass the test. When you donate plasma they have to ensure that you first have a healthy amount of iron and blood proteins to be able to donate – they don’t want to take it if you need it more! This involved a finger prick to take a small sample of blood. You also have to undergo a short physical exam in which a nurse examines your lymphnodes to ensure you do not have an infection/are sick, and the check your general health.
  3. You’re compensated for a reason. The entire process took four hours for us to complete, with all of the first time donor requirements for reading and testing. They compensate you for this time. They don’t compensate for donating blood, because that does not take nearly as long.
  4. The plasmapheresis itself might be a little frightening if you usually are afraid of having routine blood work done, or hate having an IV placed in the hospital. I recommend not looking when they place it, just to be safe! image
  5. The plasmapheresis process took about an hour for me. It is faster for some, depending on your blood volume, clotting factors, and a million other things I’m not aware of.  It ran in three cycles, withdrawing blood and removing the plasma. I was able to see the plasma as it was collected (it is that straw colored liquid in the image) so I could gauge how close I was to being through.
  6. They STRONGLY encourage you to return. Not only is your donation important, but you MUST donate again for them to use the plasma you donated on your first visit. Regulations require that the plasma be tested twice for any abnormalities  for it to be used to make the important medications that it is used for. It also takes SIX plasma donations to make ONE plasma-based medication. These medications are used for patients with ailments varying from severe burns and hemophilia to pregnant mothers with an Rh factor incompatibility. Visit this page to learn more about who benefits from your plasma donations. image
  7. Once I was finished, I was able to pick up a pre-loaded VISA card, and head back out into the world, with both some extra money, and a new found knowledge on the importance of plasma donation.

Thanks for reading!

Disclaimer: I am not a medical professional, simply a human who donated. This is my experience, and they may vary depending on the facility and person. For more information on plasma donation, please visit plasmadonation.com.