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Lupus Care for Kidneys (LuCKy) Gathering: Being Grateful and Lucky
Written by Dr. Millicent Tan-Ong   
Sunday, 04 July 2010
   Saturday, July 03, 2010 was a special day for patients with lupus nephritis. Prof. Sandra Navarra opened the session by informing the audience that third year medical students have been invited to learn from the lupus patients. Lupus patients were invited to participate in becoming “lupus patient partners” to help teach medical students about lupus. Prof. Navarra shared some real-life experiences of lupus patients and their caregivers, using these examples to inspire and encourage the patients. Likewise, Prof. Navarra shared the insights of the third year students who participated in previous meetings with lupus patients. She expounded on how love can overcome anything, on how important family support is and how grateful we should be despite the challenges. The third year medical students were reminded that doctors should remain humble as medical science does not have all the answers. She challenged them further to do their best to learn on their own as they will be the future doctors of the lupus patients. Mrs. Sylvia Reyes, one of the lupus patient partners, spoke on behalf of the patients, to thank Prof.
Navarra for organizing the session.
Last Updated ( Friday, 09 July 2010 )
Read more...
 
The LUISA Project invites patients with Lupus nephritis...
Written by LUISA Project Administrator   
Tuesday, 22 June 2010

The LUISA Project invites patients with Lupus nephritis to a special session on "Lupus and the Kidneys":
 
Date: Saturday, 03 July 2010
 
Time: 9:00 AM  to 12 NN
(Note:"Sharing" by patients at support group meeting will follow from 12 NN to 2:00 pm)
 
Venue: Angelo King Audiovisual Room, 2F UST Hospital Clinical Division
 
Agenda:
1. Updates on lupus nephritis management
2. The Filipino Lupus Nephritis database 
3. Assessment / screening for POSSIBLE medical assistance*
* Patients needing medical assistance must bring the following:
 
  a) USTH Clinical Division "yellow card"
  b) "My lupus story"
  c) Organized folder or "clear book" with copy of all
      lab/xray/ultrasound tests (in proper sequence) including kidney biopsy
  d) Barangay certificate of indigency
 
For further details call 7499746, ask for a Rheumatology fellow.
 
Last Updated ( Thursday, 24 June 2010 )
 
Special “Rheum for kids” activity at UST Hospital
Written by Dr. Ginger Alden Cabasan and rheumatology fellows   
Monday, 31 May 2010
29 May 2010
By: Dr. Ginger Alden Cabasan and rheumatology fellows

A very interesting and productive session for children with lupus and arthritis was held last Saturday 29 May 2010 at the University of Santo Tomas (UST) Hospital, sponsored by the UST Section of Rheumatology, Clinical Immunology and Osteoporosis with Lupus Inspired Advocacy (LUISA) Project under the auspices of Rheumatology Education Trust Foundation Inc (RETFI). It was attended by 20 patients, of whom 18 had systemic lupus erythematosus (SLE) and 2 with juvenile idiopathic arthritis (JIA) accompanied by parents and caregivers.

 
Last Updated ( Wednesday, 02 June 2010 )
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Lupus makes my life more meaningful
Written by Dian Syarief, Bandung   
Monday, 10 May 2010

We often find people with lupus lose hope when a medical treatment they have undergone doesn’t bring the recovery they expected. Indeed, it is not easy for people who suffer from Systemic Lupus Erythematosus (SLE) to deal with pain, physical discomfort, complications and other problems over a long period of time.

There are even assumptions that people with lupus will have to suffer from the illness for their whole life, because, up to now, there is no medical cure. Is this true?

To deal with chronic illness, especially one in which the causes and medications are not yet known, the best way is not to make ourselves suffer.

Thus, lupus should not be considered as an obstacle for us to have and to enjoy a good quality of life. Therefore, suffering from lupus is not the end of everything. Instead, we can still have a meaningful life despite it.

The effort to make the life of people with lupus of better quality and more meaningful will very much depend on how we see the problems we encounter.

This article tries to look into the problems frequently faced by people with lupus and tries to compare, as well as to appeal to people with lupus to look at the problem from a different perspective.


Read more...
 
“Themed” session: Kidneys in Lupus
Written by LUISA Project Administrator   
Thursday, 22 April 2010

“Themed” session: Kidneys in Lupus
27 March 2010
Angelo King AVR, UST Hospital

This special meeting focused on one of the major organs affected by lupus, the kidney.

Before the session started, patients filled-up a “How are you?” survey to evaluate current patient-reported outcomes, their quality of life, and the disease activity. Following this, was a “dipstick your urine” session where each patient learned how to properly collect urine and test this for protein, blood, leucocytes and other elements seen in a routine urinalysis.
 
The program kicked-off with a lecture on “Kidneys in lupus” given by Dr. Joenavin D. Ngo, Rheumatology research fellow at the UST Hospital. The scientific presentation tackled basic information on kidneys, its purpose and role in our body, what happens to the kidneys in lupus, the tests to detect and monitor kidney problems, and how we can take care of our kidneys.

The lecture was followed by a moving lupus story shared by 23 year-old male patient  Mark Anthony Osorio from Negros Occidental. As a patient with lupus nephritis, he narrated his struggles and triumphs with kidney failure, dialysis, and finally transplant. Mark’s successful struggle gave hope and light to other patients with kidney involvement.

The session ended with a lively ‘question and answer’ discussion with nephrologist Dr. Porschia Comes-Natividad, covering several issues from diet to vitamins to dialysis.

Dr. Sandra Navarra concluded the program with a presentation on the possible role of environment in lupus – reiterating the importance of our individual responsibility in caring for our environment, conserving water and proper recycling in order to protect the future of our children. This was timely as March 27 commemorated “Earth Hour”.

 
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