Celebrate World Sjögren’s Day TODAY!

 

Celebrate World Sjögren’s Day TODAY!

The Sjögren’s Syndrome Foundation is proud to join with Sjögren’s organizations from throughout the world today to celebrate World Sjögren’s Day and commemorate the birthday of Dr. Henrik Sjögren, the man who discovered Sjögren’s.
 
WorldSjogrensDay_logoWorld Sjögren’s Day focuses on increasing awareness for Sjögren’s while also stressing the need for further research, new diagnostics and new treatments. We encourage patients, as well as their family and friends, to use today as an opportunity to share your story or simply tell those around you about Sjögren’s! 

YOU can help make a difference!

  • Talk_to_a_FriendHelp Raise Awareness: Talk about Sjögren’s with the people in your life. Share your personal story or that of a loved one. Talk with family, friends, neighbors or co-workers and educate them about the disease. You can download this fact sheet to help you and you can also share these facts on Facebook or Twitter.
  • Make a Donation: Support the Sjögren’s Syndrome Foundation (SSF) by making a donation in recognition of World Sjögren’s Day or in honor of yourself or a loved one fighting the disease. The SSF continues to make great progress on behalf of Sjögren’s patients but we need your help to continue the momentum and to expand our research and awareness efforts. You can also make a donation by phone or mail:

 

 
 This World Sjögren’s Day, have your voice heard and make an impact in the fight against Sjögren’s. TOGETHER, we can change the face of Sjögren’s! 

 

 

Support World Sjögren’s Day on July 23, 2014

Sjogren's Syndrome Foundation

Support World Sjögren’s Day on July 23, 2014

The Sjögren’s Syndrome Foundation is proud to join with Sjögren’s groups throughout the world to help celebrate World Sjögren’s Day in an effort to raise the profile for Sjögren’s – a serious autoimmune disease affecting 4 million Americans!

 
Dr_Sjogren-1Created to commemorate the birthday of Dr. Henrik Sjögren, a Swedish ophthalmologist, who discovered Sjögren’s in 1933, World Sjögren’s Day aims to increase awareness for Sjögren’s while also stressing the need for further research and new diagnostics and treatments. On this day, we encourage patients, and their family and friends, to join together and have their voices heard. Make a pledge to educate others and help raise awareness for Sjögren’s! 

Ways you can help make a difference:

  • Talk_to_a_FriendHelp Raise Awareness: Talk about Sjögren’s with the people in your life. Share your personal story or that of a loved one with family, friends, neighbors or co-workers while educating them about the disease. You can download this fact sheet to help you. You can also share these facts on Facebook or Twitter.
  • Make a Donation: Support the Sjögren’s Syndrome Foundation by making a donation in recognition of World Sjögren’s Day or in honor of yourself or a loved one fighting the disease. Your support helps further the research and awareness efforts of the SSF.
YOU can make a difference!
 
This World Sjögren’s Day have your voice heard and make a donation to impact the fight against Sjögren’s.

 

AUSTRALASIAN LONG-TERM CONDITIONS CONFERENCE 2014

Waipuna Hotel and Conference Centre Auckland

28-30 July 2014

Early bird registration closes 11 June 2014

See flyer (pdf) for details: Long-Term-Conditions-Conference-2014-flyer

ANNUAL CONFERENCE – 30th November 2013

The Sjogren’s Syndrome New Zealand Inc Annual Conference will be held at the Ernest & Marion Davis Medical Library & Lecture Centre on the 3oth November 2013.

 

AGENDA

8.30am     Registration

9.00am    Opening by David Zimmerman  

9.15am    GUEST SPEAKER: Dr Fraser Burling
                  Rheumatologist, Musculo-skeletal Medicine,

10.am      GUEST SPEAKER : Dr Jennifer P.Craig PhD MCOptom FAAO FBCLA,
                 Senior Lecturer in Ophthalmology. University of Auckland

MORNING TEA: 10 – 45 am

11.00am     Annual General Meeting                     
                      Topics  to cover:  

(1)     Vote in new Secretary and Treasurer

(2)    Establish a subcommittee to organize the conferences
                           and catering

Conference Fee: $20.00
Membership Fee: $40.00

Venue: Ernest & Marion Davis Library
(Auckland Hospital, 43 Park Road)

Parking available at Wilson car park, located within a short distance from the Marion Davis Library
View Auckland Hospital Site Map

Ideas on spreading the News

The amount of information that is becoming available is vast. In a recent SSF meeting in USA  there were 10,000 (TEN THOUSAND) Rheumatologists and researchers in attendance. Sjogren’s is continuing to receive considerably more recognition and attention from practicing reheumatologists and researchers as well as potential corporate partners looking to develop clinical trials and biologic therapies for Sjogren’s. Springing from this research and knowledge and hopefully as we gather screen and learn, a solution will come.

 However back in the real world every day people have to put up with the daily problems that is bought on by SS.  The same old  problems of almost shouting and still not being heard continue.  GP’s are often pressured and have at best a scant appreciation of what is going on.
Yesterday a pleading call from a dear friend, not just a member of the Sjogren’s Society. Who is prescribed large pills (in size) from her GP and in swallowing they get stuck on the throat wall and yes she can still feel the spot days later.  
This has prompted a slight ‘split’ in our focus.  Over the past decade we have noted the same comments comming back from many speakers. They get a deeper appreciation  when they hear the problems first hand.  I am planning a few meetings just for GP’s and Rheumatologists. Maybe to dentists as well.
How this will pan out is not quite decided, but the ‘germ has sprouted’. Please continue to take information, brochures and newsletters to your doctor, even if discarded it has sown a seed-a reminder that Sjogren’s exists and there is a Society that is interested in those suffering.
Therefore  it is up to us, this includes all members, your partners and even friends and family if you can rake them in. Little voices can be heard if repeated enough times, so go fly the Sjogren’s syndrome  banner.

Also we may be able to fit in a series of one-day meetings in smaller centers so that this message can get to all SS members. Yes, there are plans afoot.  
This has become a plausible concept as we now have some funds. Costs overtook us for  some time and despite a deep desire to keep the membership fees and meeting costs low, it just compounded resulting in funds so low that we did not have enough to post out more than one, perhaps two newsletters per year.  Personally there have been a few disruptions over the past three or four years that have precluded our self-funding such ventures.

This is healthier now and this gives more flexibility and hopefully some exciting new approaches.
Commercial support can also be looked at too but only when we have something of commercial value.
 Each month I receive a series of abstracts and as I scan these I note that the bulk of them are about Diabetes. All sorts of research, but little on even Lupus,  Scleraderma and hardly a mention about Sjogren’s syndrome.   So we have to go searching  mainly in the dedicated Sjogren’s sites.
On the research front there is some information and that is really not greatly changed since
Dr Rushton went to France  I think 4 years ago.

David Zimmerman (Hon President)
(extract from Dec 2012 Newsletter)

News on the Conference – 2012

This year we had three wonderful speakers. Peggy Chen a Rheumatology Registrar here for a short while from USA  working at the Manukau Superclinic with Dr Rushton.  
A second of Dr Rushton’s colleagues was Dr Zahoor Ahmad  an ENT surgeon  Dr Zahoor also works at the Superclinic and is in private practise.
The last speaker was Simon Dean  Opthalmologist  CMDHB*/ Private Practice Eye Institute. Auckland and Manukau [Read more…]

Sjogren’s in younger groups – Comments

Some comments from Dr David Zimmerman (Hon President)
(extract from Dec 2012 Newsletter)

Sponsorship was hard-won this year and amounts given by various firms was well down on previous years and reflects no doubt the harder financial times.  As so many members are on fixed incomes this is doubly hard as costs go up, despite the buoyancy of the Auckland property market.

Below is the abstract from a Lancet article and while the diagnostic process is one we are familiar with, I note that the  pattern of membership is changing with what seems to be a much younger  group coming on board. I suspect that these are people where the disorder starts, perhaps in puberty and manifests in mid to late 20’s, finally forcing them to seek help at 30-ish. This new variant does not show  up positive on lip biopsy. So the fall-back position is blood tests.

However the underlying issue is to find out the mechanism that drives these disorders. Speaking to Dr Chen, I did understand that there is an immunoglobulin that hides deep in the glands and is difficult to get at. This encourages the protective cells to go and dig it out thus filling the glands with unproductive cells effectively blocking the gland.

Therefore I understand the key is to find what the initial trigger is and how to switch it off.

Sjögren’s syndrome

Robert I Fox

Sjögren’s syndrome is a chronic autoimmune disorder of the exocrine glands with associated lymphocytic infiltrates of the affected glands. Dryness of the mouth and eyes results from involvement of the salivary and lacrimal glands. The accessibility of these glands to biopsy enables study of the molecular biology of a tissue-specific autoimmune process. The exocrinopathy can be encountered alone (primary Sjögren’s syndrome) or in the presence of another autoimmune disorder such as rheumatoid arthritis, systemic lupus erythematosus, or progressive systemic sclerosis. A new international consensus for diagnosis requires objective signs and symptoms of dryness including a characteristic appearance of a biopsy sample from a minor salivary gland or autoantibody such as anti-SS-A. Exclusions to the diagnosis include infections with HIV, human T-lymphotropic virus type I, or hepatitis C virus. Therapy includes topical agents to improve moisture and decrease inflammation. Systemic therapy includes steroidal and non-steroidal anti-inflammatory agents, disease-modifying agents, and cytotoxic agents to address the extraglandular manifestations involving skin, lung, heart, kidneys, and nervous system (peripheral and central) and haematological and lymphoproliferative disorders. The most difficult challenge in diagnosis and therapy is patients with symptoms of fibromyalgia (arthralgia, myalgia, fatigue) and oral and ocular dryness in the presence of circulating antinuclear antibodies.    Lancet 2005; 366: 321–31

Rheumatology Clinic, Scripps Memorial Hospital and Research Foundation, La Jolla, CA 92037, USA
(R I Fox MD)
Correspondence to: Dr Robert I Fox, Rheumatology Clinic, 9850 Genesee Ave, #910, La Jolla, CA 92037, USA
bobfox@adnc.com

Anti-SSA (RO) is common, but is only found in 70% of patients finally diagnosed with an autoimmune disorder. Conversely  13.8% of a USA population was found to have this, far higher than Sjogren’s in the population, so for us it is helpful, but not diagnostic.  What things might add to or facilitate such a disorder.  How about smoking?  Nope! Neither is C-reactive protein, which is associated with inflammation. So this appears to be more linked to the interferon pathway.

AntiSSA (RO)  it may be helpful, but it’s not diagnostic, so that begs the questions… what is diagnostic? This illustrates the inadequacy of our diagnostic tools and therefore understanding of the disorder and a pathway to treatment.

Where to then… my fallback position is medieval. If it looks like a horse, neighs and eats hay, it’s probably a horse, so treat accordingly and watch the results. However this information was not available a few years ago. So hopefully it will lead to more answers

 With the destruction I see dentally, every step is urgent, the cost of delay and lack of control is high, financially, physically and emotionally, hence the need to focus funds on research where the best chance of a result is likely.

Sjogren’s Syndrome Society of New Zealand Annual Conference

Annual Conference: 1st December 2012

AGENDA

  • 8.30 am   Registration 8.45 am Opening by David Zimmerman
  • 9.00 am   Zahoor Ahmad ENT Specialist surgeon
                  CMDHB*/ Private practice Botany, and Manukau Health 
  • 9. 20 am Peggy Chen 
                 Rheumatology Senior Registrar CMDHB*
  • 9.40 am Simon Dean Ophthalmologist 
                CMDHB */ Private practice Eye Institute – Auckland, and Manukau
  • 10.00 am Panel discussions with the available Specialists
  • MORNING TEA: 10.30 am – 11.00am
  • 11.45 am Open Discussion amongst members, sharing useful tips etc.
  • 12.00 pm Annual General Meeting 
                  Venue: Ernest & Marion Davis Library
                  (Auckland Hospital, 43 Park Road)

Parking available at Wilson car park, located within a short distance
from the Marion Davis Library

Please register with Sarah@sjogrensnewzealand.co.nz
* CMDHB is Counties Manukau District Health Board