superficialsiderosis.com

Due to the heavy spammers posting junk on our site we have created a facebook group so we network and discuss the topic better.

Here is a shortcut to the group click here –> Superficial Siderosis on Facebook  See you there.

Such great news came in from Penny today here is the link to the article. http://health.usnews.com/health-news/managing-your-healthcare/policy/articles/2011/10/14/ferriprox-approved-to-treat-iron-overload

Dearest Members

We have launched for you a social networking site for the communication and collaboration between members with Superficial Siderosis and their family.

This is to help us in knowing that we are not alone and there is direction and comfort in every walk of life in which we live.

Please try get acquainted with the site, register as a member, fill your member profile and comunicate with other members and their families.

We will slowly add design to the site, resources collected throughout the web, videos, articles, doctors opinions and more.

Also this will be in collaboration with Dave Hills site superficialsiderosis.wordpress.com/ .

I my self have also been diagnosed with Superficial Siderosis and let me tell you I have been releived to meet with Dr. Michael Levy at John Hopkins Hospital in Baltimore.  You see Dr. Levy, is one of the few doctors to have 20 patients with SS and that makes him the leading resource for the disorder.  Further more he is the one and only who is trying to push hard with getting a drug approved that may hold the magic to the cure.

Also within this site other than the profiles section is a forum.  All members are encouraged to start topics, contribute to topics, communicate and collaborate openly with one another even find humor. It is not what we have or behold but it is how we could make the very best of it while living our lives to the absolute fullest.

Be patient as we add content to the site and check back often as we will try our very best in making this a visible community.

By the way did you know that there are over 1,000 searches per month on search engines for the term Superficial Siderosis? Yes there is interest out there and this along with Dave’s site will have a good portion of the traffic directed to it.

Communicate, Collaborate, & we will find the cure!

Joe