Thursday, September 29, 2011

An Open Request to IH Patients

Last week I finally made public an idea that I have had for bringing awareness to our disease, Intracranial Hypertension, and the patients who live with it every day. If you are involved in one of the many Facebook groups dedicated to our cause, then it is quite possible that you already came across this request, but I thought, before I officially launched the project I should also post the invitation here on the Brain Pain Blog!

So, without further adieu, I give you my Open Request to any and all IH patients looking to raise awareness and share their story:
Hello Fellow IH-ers,

While I recognize that it is nearly the end of IH Awareness month, I have had an idea since the beginning of September that I have been wanting to share with my fellow IH-ers that I don’t think needs to be bound to one month of the year. I simply love the wall of faces that we created in February and now on Facebook of pictures of IH patients saying “I am the face of IH.” Each time I see a new picture pop up I realize how large our population in this “rare disease” really is. However, having spent more than a year blogging, I have become obsessed with stories.

I want to share the stories behind the pictures.

I’ve been thinking it would be great to dedicate a blog post to the faces of IH. I came up with 10 questions I’d love to ask any IH patient that wishes to share their story with the world wide web. I figure, depending on the  response, this could be either a weekly segment or a monthly segment on the IH Brain Pain Blogs ( I think it would be a great resource for new and veteran IH patients to read. I think it could also offer up new opportunities for patients to connect with one another.

We share our stories in forums. We share them with our friends and family, but why not share them with the world? I think it is another way to raise awareness and I was planning on adding a link to the donation page of IHRF on each post.

If you are interested in participating, please e-mail me at with the subject line IH Interview and the answers to the questions following this letter (if there are any you would like to add or subtract, go for it!). Also, if you have a picture you would like to share with your interview and you’d like to attach it to the e-mail that would be awesome.

I’m holding out to see the response before I set up a publishing calendar, but a decision should be made by mid-October, the latest.

I look forward to hearing from you. I hope you are having a pain-free day!

All the Best,
Nicole Rivera

IH Patient Interview

E-mail (where I can contact you)

1. When were you diagnosed?

2. How old were you?

3. What treatments are you using?

4. What has been working for you (we’ll even take home rememdies here!)?

5. What complications, if any, have you experienced?

6. How has this disease changed your life?

7. What lesson(s) have you learned on this journey?

8. What one message do you have for people not aware of IH?

9. What one message do you have for fellow IH patients?

10. How can people connect with you (Facebook, twitter, LinkedIn, IH Brain Pain, DailyStrength, your blog, your vlog, etc.)?'
It is that simple. So far, in one week I have already received over 12 responses to the interview along with many more messages of intent to follow up! If you are interested, please send me an e-mail - the more, the merrier!

Also, if you know others who may be interested, please share this post to spread the word! Thanks so much!

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