Welcome to the Sneddon's Foundation
~ Healing through the Flow of Infor
* Join our meeting-by-phone! Scroll down for information.*
Sneddon's Syndrome . . .
While these physical difficulties can be overwhelming, difficulties with the medical community also pose challenges.
First, most Sneddon's patients suffer from recurrent TIA's,
small strokes that are generally impossible to detect with
medical tests. As a result, Sneddon's patients are sometimes dismissed
with diagnoses of "stress" or depression, while the severity of every episode and the reality of its threat cannot, for the patient, be minimized or ignored.
Second, Sneddon's patients who've been diagnosed with the
wrong disease (often with Vasculitis) carry the double burden
of untreated illness and the potentially disabling side effects
of inappropriate medication.
receive delayed treatment as doctors struggle to accept the
possibility of stroke in younger patients or the need for
continued preventative measures.
Most Sneddon's patients respond well to appropriate treatment. Many go on to lead essentially normal lives - but only if their doctors are familiar with current research on both diagnosis and management.
In response to these challenges, the
Foundation was formed in May 2008. Together we can
change the cli
difficult disease.
To RSVP, simply go to out "Contact Us" page and send us a note letting us know that you'd like to participate. We’re happy to answer any questions you might have about the foundation or the meeting as well.
If you’re someone struggling to sort out your diagnosis and not a confirmed Sneddon’s patient, you’ll be in good company! Roughly half of the people receiving this email are in your situation. Most confirmed Sneddon’s patients have walked in your shoes as well.
If you’re a family member, caregiver, doctor or friend of someone who either has Sneddon’s or may have Sneddon’s, you too are in good company. Many of those who write to us do so in an effort to help someone else. You are an important part of this organization.
If you’re someone who’d like to hear the meeting but would prefer to attend anonymously (without speaking or being acknowledged as a group member at the start of the meeting) we’re comfortable with that and happy to have you join us. When you email your RSVP just let us know that this is how you’d like to participate.
Finally, if there's someone you'd like to invite to the meeting (spouses, friends, family members, doctors, other Sneddon's patients or possible Sneddon's patients) please feel free! Just let us know in your RSVP how many will be joining us.
We're careful to protect the privacy of everyone who contacts the Foundation so we'll be keeping everything on a first name basis. (Of course you are free to use your own last name at any time, or to share information with anyone you connect with at the meeting and would like to email or talk with again.) We will acknowledge everyone at the start of the meeting but, for those of you who are shy, don't worry - no one will be asked directly to speak to the group.
The first part of our meeting will be a Support Group session. We’ve learned that everyone with Sneddon’s, or struggling to make sense of symptoms that seem like Sneddon’s, finds enormous benefit in talking with others in the same situation.
The second half will be devoted to our organization. We’d like to know how we could serve you better and we’d like to invite you to join us in our service for others.
We know well that many of you (patients, families and caregivers) find it hard just to get through the day. We’re inviting those of you who can assist, even in the tiniest ways, to become an active part of the foundation, to help us help others.
I can hardly say how much the work I’ve done over the last year has helped me cope with this disease myself. It does me good to be reminded each day that there is indeed a group of us and that we’re joined by common struggles, unusual as they are!
As it turns out, this is a case where assisting others really is assisting yourself. There's enormous satisfaction in knowing you've made a real difference for others who share your symptoms (or those of someone you love) and there is much you can do to make a difference! Moreover, because this disease is so often overlooked or misunderstood, every new Sneddon's diagnosis makes a significant difference to the research pool and so, makes it easier for all of us to get the best possible care.
So many of us have struggled to find diagnosis. It feels good to me to be part of an organization that applauds the work of doctors who take a stand for their patients. It's not easy to do when a diagnosis requires extra time and effort and its most promising treatment has risks. When symptoms are unusual and difficult to verify with tests, a Sneddon's diagnosis requires a real bond of trust between doctor and patient.
With your help, in the next year:
Take Good Care of Yourself –
Diane O’Leary, Ph.D.