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Sjogren's Syndrome Support

A welcome message for Sigrid from Australia


#1

@SdeC

Hi there, Sigrid

My name is Danielle and I am a Ben’s Friends intern. I wanted to take a moment to welcome you to Sjogren’s Syndrome Support.

I am so sorry to hear that you are dealing with a number of health issues, as if Sjogren’s Syndrome is not enough. It sounds like you received your diagnosis only recently. How are you feeling about this diagnosis? What has your doctor recommended in terms of methods of managing the condition? I hope you keep us updated.

You might have already discovered the search icon (magnifying glass, top right). This is a great way to browse through existing topics. Please do not hesitate to create your own discussion posts by clicking the + New Topic tab. This is a great way to ask new questions and share your story.

Hope to hear from you soon,

Danielle


#2

Hi Danielle,

      Thanks for your email - appreciate you reaching out.

      Yes my diagnosis is very new but I've actually been battling some of the symptoms for years - we've only just put it all together.

      That was probably the most frustrating this each of the issues was being dealt with separately.

      At least now I have one central point and a diagnosis!

      And this has given me great peace of mind - a coat hook to hang all this on.

      I know this syndrome presents differently in every person.

      For me I have all 8 markers in varying degrees, but nothing lupus related.

      But I've found natural solutions the best.

      So I wanted to just have somewhere to connect with others who suffer this also.

      And maybe get some natural ideas to try.

      I will get to the portal .. I've just been inundated with new clients and as my ability to work is diminished I'm currently chasing my backside around and terribly behind!

      Currently I'm not on any meds other than Dalacin V cream trial for my vulval lichen planus.

      This is by far the thing that concerns me most because it affects my marriage.

      I'm still going through final tests to confirm the diagnosis and go back to my rheumatologist in mid December.

      After which he is looking at prescribing something ... I'm not sure what it was called though.

      But there is an exciting pilot study that's been held in Australia.

      I've reached out for more information and will let you know of any more news.

      Here's the link to the info:

#3

Hi Sigrid,

Great to hear from you.

I can understand why having a concrete diagnosis has brought you some peace of mind. You finally know the source of these issues that have been impacting you for far too long. I hope you can begin exploring different methods of managing your symptoms. There is lots of great information on this site about natural remedies and techniques.

It sounds like you are dealing with more than enough… from attempting to keep up with clients to understanding this tricky syndrome. I am sorry that these stressors are impacting your marriage. I hope we can provide you with support, encouragement, and helpful advice during this busy time in your life.

How do you feel about your upcoming appointment with your rheumatologist? How are you feeling today?

Danielle