An incident happened to me this weekend which made me consider more deeply the idea of seeking your thoughts on creating a MM ID Card.  You know..a wallet size card similar to the ones you receive from Medic Alert, or the Diabetes ID Card that lets medical professionals know that you have certain medical conditions?

I was in the ER this past weekend for low BP (90/56)and I overheard one nurse scolding my nurse right outside of my room for evidently making an error in my chart because it said "Double by-pass rt side brain."  The other nurse said "How can you have a double by-pass on the right side of your brain??!!"   >:([smiley=huh.gif]  Luckily, my nurse glanced into my room, and I waved them both in and was able to explain what MM was.... ;)

I also asked them if they had access to the internet and told them they could visit this site for more info.  ;;D  I am just grateful that I was able to speak on my own behalf (as I was in the ER by myself at the time).  

That being said, it made me think--what if I was not able to explain to the emergency services what MM was?  In a different circumstance, would they just "assume" that my nurse meant "double by-pass" of my heart and work me up differently?  [smiley=huh.gif]  As we all know, time is of the essence when treating stroke victims.  :-[

Therefore, I was just wondering  what others thought about creating a MM Identification Card that we could have in our possesion.  For starters, I was thinking, information on the card would include:

• Name, Birthdate, Address
  
• Medications
  
• Allergies
  
• Person to Notify in case of emergency (Personal & MD)
  
• MM Information (Date(s) of surgery, Brief explanation/definition of MM ?
  
  Please let me know your thoughts...or if there is one that actually exists, please let me know. ;)   I do have a Medic Alert card which "includes" MM in my medical history section, and I also have a Diabetes card specifically for that particular disease.  Therefore,  I'm thiking....maybe having one for MM would be beneficial as well?  [smiley=huh.gif] (The Diabetes card was given out at a Diabetes class-looks like it is distributed by Lilly).
  
  Slowly, but surely, we can work together to help raise MM awareness about this "rare" disease (including medical professionals! ;))
  
  Thanks!
  Shan
  

Shan....

I think that's a very good idea.   [smiley=thumbsup.gif]
Will talk with you later....

Jan

Wow!  Glad you were able to set them straight and everything turned out ok for you!

I think your ID card is a great idea.  You're talking about a business card size, probably laminated card, right?  (please forgive my ignorance... being military, I've never seen insurance or medic alert type cards)

I would think it would be pretty easy to do to make something up like that on Word, or maybe even PowerPoint and make available for download.

If someone could scan a sample, I could look into making something up?

Or.... someone else could do it and I could post a link to it.

Either way, it's a great idea.

Deej

I think it is a great idea as well.  I don't have a medic alert bracelet, although I was contemplating one before I was diagnosed after my TIAs.  I would certainly carry it.

I think it would be great to get a program or an organization together about raising awareness of MM.  I actually mentioned this to Kim T in Vegas (do you remember Kim?)  I have been told it is really hard to get a non profit org off the ground, but I have heard stories of misdiagnosis or no diagnosis at all, because neuros had never heard of it.

I would be interested in hearing of anyone that may have experience in this sort of thing.

PS - I have even come up with a name (acronym) for the organization if it were to get that far...but I'll share that another time ;-)

Sandi

I made 1 last year after I lost my mind and didn't remember where I was and where my 3 yrs old son was, next thing I know that I was in emergency room, lucky for me that the rescue team found my mother-in-law phone number and called her.  The ER team do not know or heard of moyamoya( they thought my name is moyamoya) so my mother-in-law and my husband have to explain to them what is it.

It a wonderful idea you posted Shan, the one I make by my own writing with moyamoya information, surgeries date and where, doctor name, medications and what for, home phone and doctors phone and relative phones numbers, allergies, and home address and birthday.

All of that for just incase my mind go to vacation some where again :D.
Kieu

Good to hear everyone's responses! ;;D

I searched online for sample emergency ID cards and found the following:

•  This site provides a blank template for you to enter your info and print. (Watermark says City & County of Honolulu)  ;)  http://www.co.honolulu.hi.us/esd/ems/emedid.htm
  
  
•  Specific for Autism: http://www.autismcards.com/id-cards.html
  
  
• Deej--I'm liking the top border of this card!  ;) http://www.medical-card.com/productInfo.htm
  
  
• A little more "obvious" but thought this idea was neat. It was the first I've seen... "Epill Watch" http://www.epill.com/cat53.html
  

Jan--
Aloha sister!  Mahalo for your reply. [smiley=hug.gif]

Deej--
Yes, the Medic Alert Card and Diabetes card I have are  business/credit card size.  The Diabetes card I have is pretty neat because across the top are bright orange stripes which really draws one's attention.  In bold, right under the stripes, it says "I Have Diabetes."  I can scan it and send it to you so you can take a better look at it.  I also took a liking to the border above (looks like an EKG)  ;;D  I think having a "fillable" template on this site would be great!  You can solicit everyone's ideas and then formulate a 'master' template which you can revise as needed.  What do you think?

Kieu,
Wow, that sounds like a very scary experience you had  :-[  Lucky the EMS team was able to locate your mother-in-law's phone number!  It's great that you have already created a card on your own.  I personally believe these "emergency identification cards" can be very helpful in situations such as yours and mine.  ;)

Sandi,
I'm not that knowlegable with organizing non-profits (although I've worked for a few), but I believe, if I'm not mistaken, this topic may have been discussed in the past.  Lore knows quite a bit when it comes to "legal" and insurance issues, so she may be able to explain...or Deej can explain what actions he has taken already (or refer you to a previous post).

As for 'misdiagnosis' or 'non-diagnosis'....I've been there, done that. :-[  It wasn't until opinions later that I was properly diagnosed.  I wasn't told that I had MM (not sure if they knew what it was or just felt surgery wasn't an option at that point).  Nonetheless, I was just given Plavix to help control my TIA's I was experiencing... :-[  I believe there are many many many more people out there that are going through what I went through including member on this site who are still searching for more information regarding this "rare" disease"....  

Therefore, I feel raising awareness is key.  Any media attention MMians receive is productive.  I did interviews on 2 of our local news channels and received numerous calls/emails after the segments ran.  I was also thinking that brochures--placed in the waiting rooms of doctors' offices may help--or better yet, if there was an "official" or general MM brochure, the pharmaceutical reps could distribute them when they do their physician visits.  I'm thinking more for the reps in the "neuro" field that market Aggrenox and other medications used/prescribed for MMians.  I once read that a member said he/she printed info from this site and took it with him/her to their doctor visits and just hands the doctor the printed material if they don't know what MM is...

Just my thoughts...
Thanks for your responses!  ;;D

Aloha,
Shan

Shan....

Thanks for the info!!  I printed up the one from the City and County.  I don't recall seeing one for Kauai, so I just used the form you referred to.  I printed a copy and put it on cardstock to make it sturdier and will laminate it for my wallet.  A big MAHALO!!

Me ke aloha pumehana [smiley=hug.gif] [smiley=hug.gif],
Jan

Capital idea that is.

I have a medical ID bracelet that has an attached charm engraved with the address to the website myOMR.com, my Last Name and an Access Code that allows anyone to see all my personal information, medical history, medications, contacts info, insurance info, and documents. I haven't used the documents part yet, but it looks like it will allow me to upload my latest angiogram and MRI/MRA images. I'll have to give that a try. The telephone number of myOMR.com is also engraved so that the company can be called to verbally give the data should there be no internet access available. myOMR stands for my Online Medical Registry. It's easy to update the data online. You might want to take a look at the website. The bracelet and charm are atttached to my wrist so I'm not likely to get separated from it. I kind of worry about being separated from my purse during a medical emergency.

Yep, I remember talking with you Sandi about a non-profit. I think Stephanie and DJ are giving some thought to that too. I'm really looking forward to seeing the paper Dr. Steinberg is publishing this summer. I'm hoping it includes case studies of his moyamoya patients and the statistics showing his success rate with those patients who have undergone by-pass surgery. Now, that would be something to wag under the nose of a neurologist who says that "by-pass surgery has been proven to be ineffective." The neurologists I've encountered insist on cold, hard data regarding the effectiveness of a treatment option and then only value that data when its been published in one of the respected medical journals. Maybe the publication of this paper will both raise the awareness of moyamoya within the medical profession and prove to neuologists that the by-pass, when done well, is an effective treatment. Maybe then they'll finally quit taking the "Wait & See" aprroach to this disease and start saving lives.
Kim

What about something like this?

http://www.medids.com/free-id.php

My Dr. gave me a card ( it folds like a 3 fold wallet) and it has all my information on it like Drs name,  medicines, allergries, name, address,  phone numbers, ect.


I HOPE YOU ARE OK ?

Elaine

Thanks for the link Deej--I found a couple more that allows you to "fill in" your info and it will generate an emergency card for you to print--but I'm just a little skeptical of entering my personal and medical info because that particular company now has a lot of sensitive info on me  :-/  

Do you think having a specific MM Emergency ID card would be beneficial?  After reasearching the many emergency ID cards available--I'm thinking maybe we could create more of a MM informational card?  We could include our personal info on the front (name, medical history, surgeries, medications)  then on the back include MM information?  Information that would provide medical professionals a quick synopsis of this "rare" disease.  I'm thinking, in my recent case, I could've just handed over that card to the nurses.  Our physicians could also make a copy of it for our charts.  I have a typed list of my current meds (business card size) which I laminate and have in my wallet--and at each doctor's visit when they ask me if my medications have changed, I just hand them my medication card, and they xerox a copy and put it in my chart.

I also saw Kim's post about myOMR.com and actually ended up purchasing a bracelet! (I think it'll be bracelet #3!  :-X since I can't find my others..) Anyway, I think myOMR provides a great service to its members.  ;;D  For those of you who are into charms and "cutesy" emergency ID bracelets, you may want to take a look at Lauren's Hope.  I purchased a "sport" emergency bracelet for my son since he didn't want to wear the traditional looking id bracelet. http://www.laurenshope.com/

Elaine,
Thanks for asking..yes, I am doing fine. They are "fine tuning" my pressure medications.  My neuro changed one of my medications, and evidently my body didn't need as much.  Only thing that I'm dealing with are my headaches!  :-[  I'm taking Neurontin 2x daily, but that isn't helping...so I'm also taking Tylenol ES.  My neuro said I could take Ibuprofen, Advil..but I noticed from another thread that others were told not to take it.  [smiley=huh.gif] (I was told that previously too..) Therefore, I'm a lil' confused about that one....

Aloha,
Shan

Hi -

Just read this post.  Kate wears a medical alert bracelet that identifies her MM and on the back says - "See card in wallet for additional information."  She got it thru:  
                http://www.medids.com
Tara has one too - in fact, Jill gave me this website.  You can design your own however you want and they send it to you.

Sure glad you brought this up, Shan.  Thanks.

Cass

Ahhhh.... I had that same question for Teresa at our last appointment.  "What do we tell the ER if Emily has to go in for some reason?"  That is why it is good to have this site!!!  

Deej,

What do you think about a MM card which provides the basic "general" information about MMD?  One side could be our personal info, but on the other, we could possibly provide the medical definition of MM and then provide bullets about the disease?  Just a quick synopsis of the disease for emergency medical teams to get a brief overview/lesson regarding MM.  If we could all come up and agree with what we feel is important for emergency medical teams to know about this "rare" disease, then we can make this card available for your members to complete and download for their personal use.

What are your thoughts?

Aloha,
Shan

Deej--

I took this off of your "What is MM" page..and was thinking of having something like this at the top (back) of the card.  We could also include something to the fact about it affecting the M1 segment (not sure if it's in all cases).

"Moyamoya is a progressive intracranial vascular stenoses of the circle of Willis, resulting in successive ischemic events. The condition leads to irreversible blockage of the main blood vessels to the brain as they enter into the skull. It is a disease that tends to affect children and adults in the third to fourth decades of life. In children it tends to cause strokes or seizures. In adults it tends to cause bleeding or strokes."

I wear a bracelet as well...says I have a history of stroke, that I take aspirin, that I have Moyamoya - when my surgeries were and to please see wallet card.  I filled in and printed my wallet card from http://www.medids.com.  It has more details...including emergency contacts, doctors name and phone numbers, other medications I take, my blood type, "I give consent to medical treatment" etc.

I don't remember where I bought my bracelet from...

I, personally, think that would be a good idea because I'm not sure what the ER would need to know.   [smiley=huh.gif]  

I did order Emily a cute purple waterproof bracelet tonight.  I want her to be all set to go back to school!

Hi Everyone ~~~

This is a life saving line of information.

I want a bracelet and am researching some of these suggestions. If I was ever in a situation where I couldn't communicate, I'd want MOYAMOYA engraved on my forehead!!! or a bracelet with lots of information.

Here's a nifty form that husband Jack worked up so I wouldn't have to reinvent the medical wheel every time I need to write down what I take, who I am, drug avoidance, etc.  
It's in my wallet,  glove compartment in car, loose in purse, under my pillow!!!


The medical sheet says on the very top:

My name, birthdate, ss # ,  
and
"Due to MOYAMOYA DISEASE --avoids vasoconstriction and keep BP elevated. maintain Blood Pressure at 140-150 / 80-90" (first posted this on the BP line here on the board).

I don't want medical teams to be lowering my BP if I'm not able to speak, or making any of the other errors that could so easily happen..

The sheet the has a chart of  my meds, when I take them, the dose, etc

husbands name, phone. address.

Avoid  blood thinners, and vasoconstrictos like epinephrine, use Tussin DM for coughs, etc...
Only 81mg aspirin per day....

doctors, pharmacy phone information (local doctor and Steinberg), hospital.

ALLERGYS  -- contrast solution for angiogram/ SPECT (urg!!!!) , plus other allergies.

date and location of by-pass, and vena cava filter,
stroke dates...

It's really a help when going to appts -- I just have them photocopy it and all the info is right there in an easy to access format.  

This information fits on a single sheet of paper.

The other thing I carry is the mm booklet that Steinberg and Teresa wrote.
I can show that to anyone who needs a quick explanation of mm. My docs, dentist, etc all have copies.

That also helps get the word out about what it is and how to identify it in others.

Sorry this is so long but the information sheet is so convenient for me.....


Linda

Hi Linda,

Sounds like you're well taken care of.  ;)  I'm serious, in an emergency situation, it only helps US to have this type of information available.

Yesterday, I was at the cardiac non-invasive unit at our local hospital, and the tech supervisor thought I was joking when I mentioned Moyamoya."  I had to repeat myself, then explain what it was to him... Again, I wished I had something typed up so I could've just had handed it to him or read it.  He then asked me "what does MM have to do with your  [smiley=heart.gif]?"  Then I was stumped. I continued to explain how MM is a vascular disease, but I had no solid explanation of how it directly affects one's [smiley=heart.gif]  [smiley=huh.gif]

Anyway, I just received my Emergency ID bracelet in the mail.  I actually went with the more fashionable one from Lauren's Hope. http://www.laurenshope.com  I also received it in 4 days (without paying any extra shipping costs).  The specific item I ordered is Item # D22 - Double Strand Pastel Pearl Medical ID Bracelet, and I love it.  ;;D  It does not;  however, come with a medical card for your wallet.

Take care,
Shan

Those are beautiful bracelets.  

Also, I didn't even think to put the blood pressure limits on there.  Thanks LA.