H ope for the B utterflies

Hope for the Butterflies The butterfly is the symbol of lupus… The rash of wings that forms across the face on the onset of an attack. It is a strange thing having lupus. It seems to lie in wait, just around a corner somewhere. But, as ever, I remain in onwards and upwards mode and determined to keep those wings fluttering... A6

A6 • Centeno, Lisa Joy • Chan, Rosalyn • Chavez, Justin Karlo • Chiombon, Marrianne • Cho, Carmela • Chua, Joyce Hazel • Chua, Kathleen • Chua, Katrina Joy • Chua, Lesley Anne • Chua, Lester Benjamin • Chua, Melody • Co, Arnel • Co, Eunice • Co, Gregory

The symbol is beautiful. The disease isn’t. • To read about systemic lupus erythematosus in Harrison’s: its epidemiology, clinical signs and symptoms, treatment, and prognosis could only say so much. • To actually meet and converse with an actual patient with the disease, however, would be alearning experience that no 6,000 peso book would be able to provide. • Quoting from one of our facilitators: ‘The patients are the best teachers’.

The encounter… • Our group’s first encounter with an SLE patient was in our MPPRC class as 2nd year medical students: • 23, female, with rashes on her face and arms, erythematous joints, and oral ulcers, (+) ANA titers • She was so weak that she can barely carry herself and get out of bed. • After this encounter, we learned that SLE is a chronic inflammatory autoimmune disease that can affect almost any body system and meeting the SLE patient partners in class made us realize how little knowledge we have of this disease.

Every patient has a story… • The true practice of medicine lies in listening attentively to those stories and understanding them. • It is very easy to forget about the ‘people’ aspect of our education when we students spend so many years being bombarded with the science. • Listening to the six women as they presented their individual narratives concerning their battle with SLE was deeply moving. It has truly affected their lives and the lives of their loved ones.

The Medical Student • R., a former medical student, forced to quit school during her second year on account of her health and now a research assistant who supports and helps in the organization for lupus patients, new or old. SLE Patient Partners

… what if I was her? • “She made me ask myself, what if I was her? What if I am the one who needs to stop? Imagine dreaming something in your life you wanted badly ever since you are a child and just when you are a few steps behind of achieving it, you will be told you can no longer fight for that dream or else you’ll die?” SLE Patient Partners

I was lucky. “When I heard about the 2nd year med student who was inflicted with SLE and was forced to quit med school because it often initiated her flares, I realized how lucky I am that despite of having type 2 diabetes and metabolic syndrome, I am still given the chance to finish med school. This gave me the inspiration to strive hard to pass medical school and not let my condition hinder my dreams.” SLE Patient Partners

… there will always be another door, ready to open • She is a beacon that reminds us medical students that not only do we also need to take care of ourselves, but when faced with obstacles, we must rise up to the occasion and become stronger than we were before. • If a door closes, there will always be another door, ready to open as long as we continue to believe in life. SLE Patient Partners

The HRM Graduate • C., whose humor did not falter even as she went from telling us about her search for a witch doctor to how she nearly died on account of a brain abscess contracted from drinking contaminated milk. SLE Patient Partners

Being positive makes it easier. • The second patient told a close to death experience when she had a brain abscess. Despite this condition, she tells her story with so much positive outlook and she even laughs so many times. • It takes some high level of maturity to be able to laugh at things that almost took out your life. • “I’ve learned from her that no matter how hard things are, being positive makes it easier.” SLE Patient Partners

Overseas worker/mother • S., with the “superman husband” and the so-called “drama moments” who was a concrete example of how love can really help us overcome anything. SLE Patient Partners What I do is based on powers we all have inside us;the ability to endure, to love, to carry on, to make the best of what we have. We all can be “Superman” to ourselves and others.

I wanted to die, but I can’t even move… • “The great importance of our family and loved-ones as our support group was the main realization I got from the third patient. She experienced a lot because of SLE to the point of planning to commit a suicide. I remember her saying, “I wanted to die, but I can’t even move to commit suicide”, everyone laughed, me too, but after 3 seconds of “hahaha” the thought of how very hard it is sets in…” SLE Patient Partners

Need for comfort… • “This patient had an emotionally revealing discussion of her experiences living with SLE. Her diagnosis has been almost twenty years ago and took place in another continent. At the time she was working abroad with her husband and endured a difficult and long path to diagnosis. Her course with the disease included mistreatment with a cardiologist, anti-Koch’s treatment and head to foot paralysis that required rehabilitation. She also underwent a total hip replacement. Her strong family bond, which includes one son, helped her get through her illness and remains a strong source of comfort to her.” • “Her candid revelations regarding her relationship with her husband was a touching and inspiring point during the entire discussion.” SLE Patient Partners

“Hospitalizations and extensive medical examinations in Brazil can be posh.” • Somehow fulfilled a life of their own (compared to the previous two patients when they are still starting their own lives as adults)  SLE patients can live a long life as long as the disease is properly managed • Some questions that has surfaced: • “If she has to confront and “fight” her illness, at what extend can her husband and son bear knowing and seeing her battle with the disease? And the possibility of losing her anytime to the complications of the disease? • Family members and loved ones of SLE patients must be ready to “fight” the disease together with them.

Physicians must be humble. • Her story reminds me that even if the going gets tough or we falter against obstacles, we can always turn to our family for the support and love that we need to get through. With her story of her cardiologist who tried to take on a disease that were better left in other specialist, she also reminds us that we must become humble enough to admit that we don’t know everything and let others help us in helping our patients.

The Religious Believer • P., who believed in miracles and saw visions, a woman who still believed life to be beautiful even after all she’s experienced.

Spirituality and religion gives hope… “The 52 year old wife and mother of two had a unique experience with the disease in that she was stricken with class 4 glomerulonephritis. She also had vasculitis of the brain that was documented by MRI. She was discharged with neurological deficits, weakness and poor hearing. Later on in the course of her illness she suffered from leg cramps and acute gastroenteritis. She was relatively emotional during her revelations and her faith in spirituality and religion gives hope to many stricken with a chronic and debilitating disease.”

When was the last time I talked to Him? “She centered on the importance of having faith in God in fighting diseases such as SLE. Her speech made me check myself when was the last time I talked to God, focused and sincere?”

The Twins • G. and M., 16 year-old twins, diagnosed at age 9, whose caretaker cried as she remembered the helplessness she felt when she was told G. needed dialysis and it was well beyond both her and her husband’s means. They provided surprisingly young faces for the pervasive problem of rising healthcare costs and those who suffer from it.

Unseen yet great amount of courage and bravery • Looking at them on the surface, they appear to be quiet and shy. They have been faced with a disease, many will say too harsh for their age group, but if we try to delve deep inside, but one can feel that there is an unseen yet great amount of courage and bravery in both of them who face this debilitating disease. They are very lucky to have a very supporting caretaker who also has great strength and believes in them.

Beyond the book… • In short, the Patient Partners forum did more than teach us about SLE from a patient’s perspective… it took the disease from a figurative and abstract setting and made it real. • It was no longer something we students just studied and read about… the disease now had a face, and a story, to go with it.

Reflections “Their stories moved me. I salute all of them because despite the disease that they have, they never gave up, they never lose hope, they just fight and believe that they will conquer and be at par with their illness. They never let SLE ruin their lives, in fact that made them stronger. They become a fighter in their own rights.”

Reflections • “Cardiovascular problems and diabetes mellitus are two of the most dreaded diseases for me. If I had to choose between these two, I would just like to have a cardiovascular problem. This kind of perception changed when I met the SLE patient partners in class. “

Reflections “I cannot sympathize with the patients, I don’t know what they are really going though. What I can do for them is that I can be a doctor. I can learn about the disease, I can educate people about the disease. With the knowledge I have, I can give them the best care I can to help ease their pain. I may not be able to cure them but maybe I can make life a bit easier.”

Reflections “It is good that there are organizations or groups who are reaching out to SLE patients. Letting them know that they are not alone with their disease and that means a lot to them.” “I also realized that with this chronic disease that comes with a lot of complications, that money is a very important factor but above that the will of the patient, support of the loved ones and faith are the most important factor that would determine the survival of the patient. It is amazing that after having half of the brain filled with abscess, a patient could survive and still live productively or after being told that a patient being bed ridden for months and told that she will never walk again, be able to walk or almost dying that survive and be able to share her experience to us. “

Reflections “As I recall their stories it is how they struggled and fought with this disease that that stick with me the most and helped me understand this disease better. It is amazing that they are still able to live their lives happily and productively and to be able to look forward to the future knowing that anytime this disease could strike again may be worst than the previous attack. “I guess it is best summed up by one of the patient when she said that despite everything she still looks forward to the future with SLE hoping that it would be cooperative with her.”

Reflections • “SLE isn’t just about having butterfly-shaped rashes, anti-dsDNA antibodies, and apoptotic cells in your blood smear. It could be about losing your beautiful hair, dropping out from school, or abandoning dreams but also it can be about rebuilding relationships with your family and friends, and having stronger faith in God.”

“Previous knowledge of SLE just evolved around the clinical features, the complications, and the short-term management of the acute flares. Obviously, we are missing out the bigger picture and that’s what dawned during the patient partner encounter.”

Reflections “I was diagnosed with type II diabetes and metabolic syndrome. With this came lots of restrictions and lifestyle changes. I used to dwell on this so much that I got into depression sometimes. But when I met our patient partners with SLE, I was overwhelmed with their self worth, discipline and drive to get by each day. All of them may have the same disease, but they have different life changing stories to tell.”

“After hearing all these stories, I came up with the realization that maybe the butterfly rash in SLE that patients symbolizes the chance God has given them to spread there wings and inspire and show to other people how lucky they are with there lives, how beautiful life is and that we must give importance to the things we have, and like the wings of the butterfly, how colorful life can be.”

Thank You  -A6-

H ope for the B utterflies