Saturday, July 2, 2011

Support for Migraine - Who's Responsible for the Disparity?

I recently took a long driving trip with my parents where we were able to talk about many things including Migraines. I asked my father about the action alerts I have forwarded to him and quoted many of the statistics mentioned in the article I have reblogged below about the extremely low percentage of Migraineurs who received the alerts that actually acted upon it.

An action alert is basically a call to action, times when the Alliance for Headache Disorders Advocacy (AHDA) needs people to write to their Senators and members of the House, asking them to support requests that the AHDA advocates have made of them in person or other issues that have come up.

When these alerts go out, we really need to help ourselves or the people we care about by taking the 10 minutes or less it takes to respond to these alerts. It really is important that our politicians start hearing from their constituents so we can start getting the help we need for Migraines. You don't even need to know who represents you in the Senate or House or their email addresses. It's truly that easy.

Yes, my father did vaguely remember receiving that email from me and only now kept asking me to resend this information so he can take the proper action the next time an alert goes out. He not only has me as a Migraineur, but he has many grandchildren, nieces, great nieces and others that need help with this disease.

This interaction with my parents and other recent Migraine dealings really has me thinking that I need to take a different approach with my friends and family who always say they want to help. This is how I need their help the most as it will also help many of my friends and family who also have Migraine disease.

Do you receive these action alerts? Did you act upon the alert after you received it?

We need to help ourselves. One way I like to look at this is that I have received invaluable help from other Migraineurs and this is an easy way I can give so much back, to pay it forward, for what I have received from them. If you have not done so already, please signup to receive an AHDA alert and act upon it when you receive the alert.

Earlier this week, a new entry was posted on the blog of the Alliance for Headache Disorders Advocacay, Why the Disparity in Attention and Support for Migraine and Headache Disorders? Written by Bray Patrick-Lake, an AHDA board member and President and CEO of the PFO Research Foundation, this blog entry echoed some of what I've frequently thought.




Diana Lee said...

I'm really glad you're bringing this up because I don't know how to motivate people to actually take action when we ask them to. My mom and two best friends do, but I think that's about it. Out of all the people who follow my blog and interact with me on Facebook, Twitter, etc. It's frustrating to me.

Teri said...

Thank you so much for this entry and for reblogging! Every time even one person posts something like this, it truly helps raise awareness.

You're the best!

MigrainePuppet said...

Unfortunately, I think we are going to have to keep bringing this topic up. I don't think we necessarily connect that we must do something in order for us to get all of the help we need. We can't take the backseat as we are like a grassroots effort where we need to help ourselves, enlist the help of those around us and have them spread the word too. That's the only way we are going to get anywhere. It is extremely frustrating especially knowing everything we go through.

We used to have this acronym at work, HUHU. It stood for 'Help Us Help U'. I think that is fitting in this situation as well where the AHDA is trying to help us but need our help too. I believe it is the least we can do and the best way to pay back what I have received.

I will be talking with more family members face to face this weekend. I can only hope it goes as well as it did with my dad.

Kelly said...

I respond to the action alerts and I also have my husband respond. I have him dictate his letter to me. You brought up a good thought that next time I will individually contact my immediate family members and make a personal plea. I post to facebook, but I think often people over look them and may not realize how truly important these things are and how they make a difference. I have also sent mass emails in the past to loved ones, but obviously those people are not reaching out either. Next time I receive an action alert this is what I'm going to do in my circle. I'm not sure how to motivate the masses though. I feel very frustrated about it as well. I do have a facebook friend who kept posting and reposting multiple times during the day about her health cause and why it was important to her that we sign this petition. Maybe I will be as "annoying" or smart as this woman next time and keep pleading for my fb friends to join in.

Thanks for bringing this up. We will need to continue to bringing it up over and over again!

MigrainePuppet said...

Kelly - I had also tried emails and facebook only to get no responses back. I think you are right about it being to easy to overlook these methods.

I was able to talk to different family members this weekend and hope it will be much more rewarding. They seemed to genuinely want to help too. I also brought up about other Migraineurs that they knew or other people who may be interested in supporting Migraineurs. They all knew someone else they could talk to and forward on the message.

I thought I could bring it up now and get them any information they needed so we wouldn't be in a scramble when the next alert comes out. This way, hopefully they could pass it on now as well.

Thank you. We definitely need to keep bringing it up!

Jamie said...

I couldn't remember if I was signed up or not (I get action alerts for a couple other diseases, which I respond to... but I can't remember whether one of them is/was migraine). In any case, I (re)signed up, so I'll get them for sure now.

I wish I knew how to motivate others to participate, too. I'll definitely try with my family/friends. Thanks for sharing this, though.

MigrainePuppet said...

Thank you for making sure you are signed up Jamie.

I know it is not easy to motivate others to participate. I have started on a small scale with my family. Hopefully with the practice with them, I can expand more and keep gaining some momentum. I've gotten pledges from quite a few family members with promises that they will pass it along to other Migraineurs they know who suffer from Migraine disease.