Home Page

Your Subtitle text

Welcome to the Sneddon's Foundation

~ Healing through the Flow of Information ~

* Join our meeting-by-phone! Scroll down for information.*

Sneddon's Syndrome . . . is a rare neurovascular disorder combining a bluish, net-like mottling of the skin and transient neurological episodes which are often severe. Many Sneddon's patients also suffer day-to-day battles with dizziness, severe head or eye pain, unusual muscle spasms (often in the face) and high blood pressure. For all Sneddon's patients there are worries about the possibility of stroke and memory problems that sometimes develop into early onset dementia.

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.

Finally, Sneddon's patients with full stroke sometimes

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 U.S. Sneddon's

Foundation was formed in May 2008. Together we can

change the climate of confusion around this

difficult disease.

~ The Sneddon's Foundation: Healing through the Flow of Information ~

Come to the Sneddon's Foundation Meeting-by Phone!

Our first year has been a great success. At our first phone meeting last year, we guessed right: there are many, many people out there who need information and support when it comes to Sneddon’s Syndrome and the strange cluster of symptoms that define it. The response to our website has been overwhelming!

We’ve teamed up once again with Jos Gilsing, founder of our partner Sneddon’s Foundation in Europe, to organize our second annual phone meeting. We’d like to invite you all to be there, Saturday, September 12 around 4:00 pm Eastern Time. Participating is a free and simple process.

We’d like to make sure that everyone has a chance to speak if they’d like to, to ask questions or to answer questions in discussion. Because these sorts of things can be very tough to organize with large groups, we expect to schedule 2 or 3 smaller groups, each in the late afternoon/early evening of September 12. Please RSVP as soon as you can so that we can organize and schedule things. Soon afterwards, you’ll hear from us with an exact time for your meeting, along with the phone number you’ll need to reach the Foundation.

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.

Who’s the Meeting For?

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.

The Meeting

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.

A Few Words from Diane

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:

*We’ll reach out to major medical centers all over the country in an effort to build a database of doctors who can diagnose and treat this disease.

*We’ll build a website that allows patients to chat with other patients, and doctors to contact other doctors.

*We'll organize regular support group meetings online and/or by conference call.

*We’ll organize and post topical pages of medical research so that doctors can refer to our website for quick answers.

*We’ll send out a questionnaire, tabulate its results, and post them on our website. This data will represent the largest sampling of Sneddon's patients ever gathered.

* For the benefit of the many patients battling this disease alone and without treatment purely because it’s unfamiliar to their doctors, we’ll begin the process of fundraising, and use those funds to raise awareness in the medical community.

*Ultimately, we’ll support research on Sneddon’s Syndrome, so that those in the early stages of disease can avoid the onslaught of difficult symptoms we’ve faced.

Patient-run organizations have become a powerful force in the medical community! Whether you join us simply by participating in the meeting, or you do find yourself able to offer some assistance to the Foundation, we're very excited about the prospect of coming together as a group and we look forward to hearing from you!

Take Good Care of Yourself –

Diane O’Leary, Ph.D.