Story submitted to Rare Disease Day 2011

For anyone who already knows me, it's not a new story, but today I submitted the following

to Rare Disease Day USA in hopes of bringing more awareness. Heaven knows we need it! :)

My name is Patti and I have multiple cavernous malformations, CM's throughout my brain.

Cavernous malformations also known as cavernous angiomas, are malformed thin-walled blood vessels which resemble a raspberry. Multiple CM's such as mine are familial.

While estimates vary, it is estimated 1 in out of every 100 – 300 people will present with cavernous malformations, with symptoms of seizures, stroke-like symptoms, headaches and hemorrhages, often referred to as bleeds.

CM's are in the same vascular malformation “family” as the arteriovenous malformation, AVM.

While different in structure, both CM's and AVM's have a tendency to bleed, or hemorrhage. Once either lesions bleed, they are most likely to bleed again.

Neurosurgeons specializing in the treatment of CM's and AVM's are in a subspecialty within the specialty of neurosurgery and it is not uncommon for patients to go outside their geographical area as I have done for treatment @ Stanford University Medical Center, Stanford, CA.

Presently, surgery is the only treatment for cavernous malformations.

Between 1987 and 2010 I have had 4 bleeds requiring surgery in various locations of my brain.

My recent surgery of 3/9/10 was in my right thalamus (on top of brainstem). Because of the deep, eloquent location, the involvement and bleeding of this thalamic CM, I have met greater challenges in this recovery, including time in rehab relearning to walk with a cane and coping with unusual sensations on my left side.

All things considered, I am doing quite well.

Because I have multiple CM's remaining throughout my brain I will always be at risk for another bleed and require annual MRI's to be reviewed by my doctors.

CM's are among the 'unknown' disorders to the general public and many medical communities. I can only hope for more research, awareness and treatment options, and try to live my life to the fullest. One day at a time.

It’s extremely admirable that you seize these opportunties to help educate people (the professionals and non-professionals)! Keep up the good work, Patti!!! At some point, every illness/disease was ‘rare’, so the more information everyone can ‘put out there’/contribute, the better it will be (for us and the ones whom have not yet been diagnosised).

Thank you Cindy & Ninibeth for your kind words!!! :slight_smile:
We can only hope the good energy we put out will help others in the future.
Hoping you had a happy Thanksgiving - there is much to be thankful for.
Patti :slight_smile:

Thank you, James! :slight_smile:
‘We’ as survivors are all strong, living with the unique challenges of AVM’s or CM’s.
Be well and keep up your determination!