Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 Just a little note... I am on the Marfan snail mail list and get some of their information. This month they sent an emergency card that can be placed in the wallet addressing how to look and treat aortic dissection. In the area that you fill in with docs name you can either check 'marfan syndrome' or 'related disorder, specify' and it gives a line to fill that in. If interested anyone could probably contact them and make a request for a copy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 I was wondering if anyone has those emergency bracelets or necklaces that say Ehler-Danlos Syndrome on them. I don't know if it would be necessary unless you have the vascular type. But, I thought I might get them for the kids if it turns out we have it. Does anyone have one of those? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 From: Shazinoz Subject: Re: Marfan emergency cards , I have H-EDS and wear a medic-alert bracelet that says " Allergies, Ehlers-Danlos Syndrome, RSD " this way even though I have No known vascular issues they are that bit more careful in emergencies of my joints and with me in general. ***************************************************** Are you still using the CD? I thought that was an excellent idea to get all the info in a small space. Cindy C. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 You should have a wallet card made and laminate it. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 You should have a wallet card made and laminate it. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 You should have a wallet card made and laminate it. -Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 yes i do, i have one in the car and one in the pack i take to doctors etc. This is mainly my medical history and copies of reports etc. The paper history is more for emergencies etc , the other day when i ended in the ER with this darn shoulder they again LOVED it as they knew instantly what med's i took, what my allergies are and what medical problems i have and what NOT to do with my body. Sharon > > From: Shazinoz > Subject: Re: Marfan emergency cards > > > , > I have H-EDS and wear a medic-alert bracelet that says " Allergies, > Ehlers-Danlos Syndrome, RSD " this way even though I have No known > vascular issues they are that bit more careful in emergencies of my > joints and with me in general. > ***************************************************** > Are you still using the CD? I thought that was an excellent idea to get all the info in a small space. > Cindy C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 yes i do, i have one in the car and one in the pack i take to doctors etc. This is mainly my medical history and copies of reports etc. The paper history is more for emergencies etc , the other day when i ended in the ER with this darn shoulder they again LOVED it as they knew instantly what med's i took, what my allergies are and what medical problems i have and what NOT to do with my body. Sharon > > From: Shazinoz > Subject: Re: Marfan emergency cards > > > , > I have H-EDS and wear a medic-alert bracelet that says " Allergies, > Ehlers-Danlos Syndrome, RSD " this way even though I have No known > vascular issues they are that bit more careful in emergencies of my > joints and with me in general. > ***************************************************** > Are you still using the CD? I thought that was an excellent idea to get all the info in a small space. > Cindy C. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 6, 2004 Report Share Posted February 6, 2004 yes i do, i have one in the car and one in the pack i take to doctors etc. This is mainly my medical history and copies of reports etc. The paper history is more for emergencies etc , the other day when i ended in the ER with this darn shoulder they again LOVED it as they knew instantly what med's i took, what my allergies are and what medical problems i have and what NOT to do with my body. Sharon > > From: Shazinoz > Subject: Re: Marfan emergency cards > > > , > I have H-EDS and wear a medic-alert bracelet that says " Allergies, > Ehlers-Danlos Syndrome, RSD " this way even though I have No known > vascular issues they are that bit more careful in emergencies of my > joints and with me in general. > ***************************************************** > Are you still using the CD? I thought that was an excellent idea to get all the info in a small space. > Cindy C. > > Quote Link to comment Share on other sites More sharing options...
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