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2007 Lupus Symposium & Christmas Party Print E-mail
Written by Sandra, Betsy, Lanny, Allan, Meng, Reggie, Evan, Jea, Jovie, Tina, Japit and Esther   
Sunday, 06 January 2008

2007 Lupus Symposium & Christmas Party

The Philippine Rheumatology Association, Lupus Foundation of the Philippines and the LUISA (Lupus Inspired Advocacy) Project jointly held the Lupus Symposium and Christmas Party last 08 December 2007 at the Thomas Aquinas Research Complex (TARC) at University of Santo Tomas.

The day’s activities opened with a mini-symposium on “Three topics in Lupus”, participated in by the Rheumatology Training Programs of St. Luke’s Medical Center, University of Santo Tomas Hospital and University of the Philippines- Philippine General Hospital.  Following welcome remarks by PRA president Dr. Evelyn O. Salido, the 3 scientific presentations consisted of: Updates in Pathomechanisms of SLE presented by Dr. Laniyati Hamijoyo, B – Cell Directed Therapies in SLE delivered by Dr. Elizabeth Edralin and Excerpts from Asia Autoimmunity Forum by Dr. Japit Galagaran. The session was chaired by Dr. Lyndon John Q. Llamado.

 

A Holy Mass officiated by Fr. Pablo Tiong. O.P. followed the scientific symposium. The homily was brief but meaningful, citing the significance of the feast of the Immaculate Conception of the Blessed Mother, with Fr. Tiong sharing his personal experience with another difficult autoimmune disease similar to lupus. Sr. Norma Ermac and Ms. Sylvia Reyes led the hymns during the mass.

Then, followed the simultaneous group sessions for patients and caregivers, including:  “Children with Lupus” facilitated by Dr. Christine Bernal and Dr. Francis Dimalanta; “Caring for Patients with Lupus” for caregivers under the supervision of Dr. Rosario Baes, Dr. Carter Rabo, Dr. Harold Gomez and Dr. Auxencio Lucero; “Special problems in male lupus” by Dr. Andrei Rodriguez, and “Frequently Asked Questions in SLE” facilitated by Dr. Julie Li-Yu, Dr. Emanuel Perez, Juan Javier Lichauco, Dr. Ruth Saguil-Sy and Dr. Edgar Ramiterre.

 

Summary of the discussions during simultaneous group sessions:

Frequently Asked Questions by SLE Patients Subgroup

 

1.    There is perceived limited opportunities for work and employment as SLE was denoted as a hindrance or a handicap for employment when they apply for work.

Patients are advised to seek or request either a medical certificate or clearance from attending rheumatologist prior to application for employment. Entrepreneurship and livelihood projects (e.g., handicrafts, poultry) among SLE patients are likewise encouraged and self-sufficiency and dignity are emphasized.

2.        Use of alternative and cure-all medicines including herbals (e.g., narra bark and jade) in treating SLE.

There is no clinical evidence to support the use of these alternative medicines. As long      as they do not cause harm to the patient, and the patient can afford them in addition to their standard medications, there is no objection to using these medicinals.  Standard therapy supported by evidence and diligent monitoring is the preferred treatment strategy for patients with lupus.

3.        Role of glutathione or metathione in SLE.

                                There are no efficacy and safety studies done on the use of glutathione or metathione in SLE.

      4.  Exercise and vitamin D that is activated by sunlight are necessary for the prevention of osteoporosis. SLE patients, however, was advised from sunlight exposure. This is perceived to restrict exercise and outdoor activities.

                            In this regard, activities that involve sun exposure are discouraged but there is no limitation in exercise and outdoor activities as long the patient is protected by sunscreens (SPF 30-50) and with appropriate clothing wear. The timing and duration of sun exposure should likewise be regulated.

       5.  Difference or similarity of low blood pressure (if there is) and anemia.

                               Low blood pressure is different from anemia. Anemia is defined as low hemoglobin levels and may be present even among patients who have developed renal problems due to elevated or high blood pressure for a long time. They have insufficient erythropoietin necessary for red cell production.

       6. Relation of diet to a sensation of “imbalance” and numbness on both hands.

                        The prescribed diet to SLE patients is that of low salt and low fat. Not all symptomatology can be attributed to the type of food intake alone. Other causes of neurologic symptoms such as vertigo, dizziness and numbness such as high blood pressure, elevated blood sugar and insufficient blood flow through the carotid arteries to the brain that can cause stroke should be ruled out.

       7. Toxicity with megadoses of vitamin C or ascorbic acid.

                            Ascorbic acid is a water-soluble vitamin. In excess, it is excreted through the urine and should not cause toxicity.  However, moderation in everything is the rule. There is no reason to take in excessive amounts of vitamin C if this will be only excreted.

       8. Palpitations in SLE.

                             Palpitations are conscious perception of one’s heart beat. It may be isolated and occur only for a short period of time. In this instance, it may be observed and relaxation techniques may be helpful. However, if it occurs for a longer period and more frequently, with accompanying chest pain, difficulty of breathing and diaphoresis, more aggressive investigation as to its cause (e.g., lupus activity, heart disease, thyroid disease) should be done.

       9. Depression in SLE.

                                Depression is a common complaint among SLE patients. It may arise due to the disease activity itself (neuropsychiatric lupus) or as side effects from treatment; steroids in particular. It is important to know which of these 2 causes the symptoms because the management will be entirely different.

      10. Concerns regarding nail, joint and skin changes, particularly stretch marks, in SLE.

                                Nail discoloration may be a result of treatment with hydroxychloroquine. Other changes may also be secondary to fungal infections. Joint deformities that are usually non-erosive may also occur in SLE. Stretch marks are a result of the lack of collagen and elastin, steroid intake and shifts in body weight.

      11. The immune system and lymphadenopathies in SLE.

                                SLE is characterized by an overactive immune system. The cells of the immune system are also found in the lymph nodes that serve to protect us and may be enlarged due to infections. Lymph nodes may be enlarged also in SLE because the cells are actively producing antibodies that attack one self.

       12. Prolonged menstruation / menstrual irregularities

                                SLE may be associated with menstrual irregularities because hormones also play an important role in causing the disease. They may also occur as a result of treatment with cyclophosphamide.

       13. Cataract and osteoporosis with steroids

Cataract and osteoporosis are well-known complications of chronic steroid use and patients should be monitored diligently for the onset of such complications so that end results such as blindness and fracture, respectively, may be prevented and treated.

       14. Chat room and website
                                The website for lupus is at www.lupus.ph and  www.luisaproject.org

       15. Hydroxychloroquine versus Chloroquine

                                Hydroxychloroquine and chloroquine are related antimalarial medications studied and found to be of benefit for patients with SLE, especially for those with skin and joint manifestations. Hydroxychloroquine is less potent with fewer side effects. It is also more readily available compared to chloroquine.

 


Newly Diagnosed SLE Patients Subgroup



Several issues were raised and among them were concerning how a person gets lupus, which were more prone to developing lupus, whether it was hereditary, and what are the triggers or precipitating factors for SLE. A lively discussion ensued on why people with SLE are very prone to develop infections. The patients were advised on precautions on how they can minimize exposure to infections, and on how medications can be adjusted by their doctors to avoid unwarranted side effects. The importance of compliance to medications and adherence to treatment plans were then reinforced. Lastly, the role of some local medications on SLE was discussed.  Patients were advised to visit their doctors for regular monitoring and check up.

 


Male Lupus Patients Subgroup


Lupus is often considered primarily a “women’s disease” as this disorder is nearly nine times more common in women of child bearing age compared to males. This was clearly seen during this particular gathering wherein only 7 out of the 150 SLE patients were male. During the session, there was a significant difference in the way men react to the diagnosis of SLE. The emotional stresses for men with SLE are a little bit different from those experienced by women with the disease because of the societal expectations of men. For example, having lupus he may no longer be able to perform or progress in his work environment, not be able to continue working to support his family and may have difficulty in performing duties or activities that involve physical labor. The session ended on a positive note in which all the 7 male patients vowed to help each other in their own capacity.

 

Caregivers Subgroup


The caregivers group was further subdivided into several subgroups and each subgroup was facilitated by one consultant and one Rheumatology fellow. The topics of discussions were mainly centered on the issues and concerns of the caregivers that were effectively answered by the facilitators.

Among the issues raised are as follows:

1.        The financial burden of treatment considering that majority of those afflicted attendees are somehow financially handicap and so they are hoping for support groups that can help them sustain the steady supply of medications

2.   The behavioral pattern changes of their sick love ones that the caregiver have to deal with; they were enlightened that they should give each other time for about six months to adjust to the disease specially for the newly diagnosed ones, not to spoil them because they are sick but to respect and take care of them.

3.       The hope for new treatment modality that would bail out their relatives and family members from the disease and so they are awaiting for new drug researches/trials

4.      The loss of employment  and education during the time of sickness and  the possibility of returning back upon  remission

5.     Their gratitude for the Lupus group that serves as their support system  where they drew their strength to continue to deal with the affliction

The sharing was spontaneous and would get emotional and light at some points but it was all stimulating where all participants were all more than interested to share their own stories.

 

 


Children with Lupus Subgroup 


This session was especially prepared for our very young pediatric lupus patients and their caregivers.  Five patients together with their caregivers actively participated in the said session.

Four parts of the learning experience designed for the young ones 

Part 1: Letra o Bayong: The Generalities – the children were asked questions about the simple generalities and how much they know about lupus.

Part 2: Lupus and my body. The children were provided with a cartoon representing their body and they were asked to place a sticker on the body part/s that was/were affected by lupus. Each child shared how lupus affected their body.

Part 3: Mama and me. The mother or their caregiver together with the patient was asked to solve a puzzle and the first to finish got a special prize. This part of the session represents the bond and the partnership of the parents and the patient in dealing with lupus.

Part 4: How I see my lupus: a self expression. The children were given a freehand in expressing how they perceive lupus affecting their lives through artwork (drawing). They were given a chance to share with the other kids their feelings and points of view.

 
Overall, there was a total of 380 attendees consisting of 138 female adult patients, 7 male adult patients, 5 pediatric patients, 180 caregivers, 30 physicians, and 20 medical students.


 

During this event, all the patients were invited to Lupus website registry, one of a program of LUISA project created by Dr. Millicent Tan-Ong and was assisted by Mr. Wilfred Manuel B. Villarruz and Mrs. Pia Villarruz for all lupus patients. They were facilitated by 5 laptops which directly connected to website. Patients can registry themselves and can access freely all information about lupus, get the newsletter and may involved in the chatting forum.

  

In the light of the Christmas season, the season of caring and loving, the event was fittingly concluded by a Christmas Party for all attendees. A lot of gifts, songs, dances, games and happiness were shared among all.

 

Last Updated ( Monday, 03 March 2008 )
 
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