I've just been diagnosed with Sjogren's Syndrome...
Welcome to the club. For many people, diagnosis is a relief, because they finally have an
explanation for problems they've had for years. For other people, diagnosis feels like
yet another injury heaped upon them.
In either case, you can do several things to get yourself oriented.
- An excellent starting point is by reading
Sjogren's Syndrome: A Guide for the Patient, by Drs. Robert Fox et al.
- A second basic step toward getting informed and staying informed
is to join the
Sjogren's Syndrome Foundation (SSF).
Members receive a monthly newsletter.
- Next, you should read the Sjogren's Syndrome Handbook.
The Handbook will give you a good medical background
in what is known about the disease that has made itself part of your life.
- Importantly, you can find Sjogren's community
for practical and emotional support from
people who have gone through (or are currently going through)
something like what you are facing. Living well with Sjogren's is an
acquired skill. It usually takes months to learn the basics,
and years to fine tune. Good mentors can take you much farther and much faster than
you are likely to get on your own.
You have been diagnosed. That means that you have found a physician who
could recognize Sjogren's Syndrome -- good; for some people that step takes many years.
But have you found a good team of people to take care of you?
If you're not convinced that your team is as good as
it can be, here are some notes on finding top-notch treatment for Sjogren's.
Finally, there are More resources for Sjogren's Syndrome that you can avail yourself of as time permits.