Hello everyone.
I am pushing our hospital to approve IVIg therapy for my husband, who is still in hospital recovering from his first SCLS episode. When he is finally discharged, he will have spent over 5 months recovering, and is coming home disabled.
I am preparing a letter and case reports to give to doctors and would also like to give them a list of patients successfully using IVIg therapy to drive the message home.
If you are using IVIg therapy, and don't mind me giving out your name, could you please e-mail me the following information:
- your name
- your location
- your doctor's name and contact info
- how long you have been using IVIg, and has it worked
I am somewhat disheartened with the limited knowledge on SCLS at the hospital although I certainly don't fault our doctors due to the rarity of this syndrome.
But I do feel I need to become much more assertive and advocate on my husband's behalf as I believe the quality of his future life depends on it.
If you are able to help and don't mind your personal information being shared, please e-mail me your information to:
liesaevans@live.com or liesa@shaw.ca.
I thank you for any help you can offer.
Liesa Evans