HFL turns 1!

You are all invited to attend HFL’s anniversary/Christmas party on December 3 (Sunday), 1pm to 5pm.

Costume: Butterfly

Please check our facebook event page for the final venue: https://www.facebook.com/events/179495325952174

Let’s Zumba!

Hello Lupus Warriors!! Let’s be active and healthy!! For the month of November, Let’s go and enjoy doing Zumba together! Sign-up now, planaforma makati can only accommodate 20 pax.

RSVP: https://www.facebook.com/events/1770107526622037

 

Hope for Lupus Run 2018

You’re all invited to join the Hope for Lupus Run on January 21, 2018. On-line registration is now open at http://www.pinoyfitness.com/2017/10/hope-for-lupus-run-2018-in-sm-mall-of-asia/

You can register on-line from October 15 to November 30. In-store registration at GNC stores from December 1, 2017 to January 14, 2018.

 

 

Save the date my beautiful lupus warriors! Our Hope for Lupus Run is finally pushing through next year January 21, 2018.

You’re all invited to join the Hope for Lupus Run on January 21, 2018. On-line registration is now open at http://www.pinoyfitness.com/2017/10/hope-for-lupus-run-2018-in-sm-mall-of-asia/

You can register on-line from October 15 to November 30. In-store registration at GNC stores from December 1, 2017 to January 14, 2018.

Please help us spread the word by sharing and reposting. Invite all your friends and family to join. This event is open to everyone. There is a 1k march for us lupus warriors who cannot walk or run very far bit there is also 5k, 10k and 21k for your friends and family who want a challenge. Let’s go!!!!

Lupus is no death sentence

By Alex Y. Vergara
Images by Noel Pabalate

For almost a decade, Rep. Emmeline “Em” Aglipay-Villar had kept a deep, dark secret, which only a few close friends and family members knew about. Villar was afraid that had she come out with it, people, especially her constituents, would think that she was weak and incapable of handling a demanding and stressful job.

But the wife of Department of Public Works and Highways Secretary Mark Villar eventually had a change of heart. Not only is the secret of her living with lupus out, the 35-year-old lawyer, politician, and mother to Emma, who turns two this September, even collaborated with a group of rheumatologists in writing a book on the mysterious, dreaded, and often-misunderstood disease.

“People keep asking me why only share it with the public now when I’ve had lupus for quite some time already,” said Villar, who was still single and working in a law firm when she was diagnosed. “I was hesitant to come out and start a foundation and be the face of those with lupus because of my position in government. I wasn’t sure how this would impact my work.”

Well, not anymore. Villar, together with Drs. Angeline Magbitang-Santiago, Evelyn Osio-Salido, and Geraldine Zamora-Racaza, wrote Living Better with Lupus (available at National Bookstore) in the hopes of providing those with lupus useful information and answers to commonly asked questions about the autoimmune condition, its symptoms, treatments, and even basic tips on what to indulge in and avoid in order to better manage it.

One such treatment, apart from occasional blood transfusions, is chemotherapy. Yes, the same chemotherapy resorted to by oncologists.

“But the dosage we use is different,” said Racaza. “Chemotherapy modulates the disease in the cellular level. But lupus is not cancer.”

What is it then? According to an online article on Medical News Today, “lupus is a chronic autoimmune disease in which the body’s immune system becomes hyperactive and attacks normal, healthy tissue. This results in symptoms such as inflammation, swelling, and damage to joints, skin, kidneys, blood, heart, and lungs. ”

“Lupus,” the  article went on, “makes the immune system unable to differentiate between antigens (a substance capable of inducing a specific immune response) and healthy tissue. This leads the immune system to direct antibodies against the healthy tissue—not just antigens—causing swelling, pain, and tissue damage.”

Villar and two of her collaborators launched the book recently. As president and founder of Hope for Lupus, she also used the occasion to promote her seven-month-old foundation, which provides information, referrals, moral support, and even financial assistance to needy patients with lupus.

One of the foundation’s projects, in cooperation with the Department of Health, is to put posters about lupus, including its common symptoms, in the country’s numerous barangay health centers to disseminate awareness.

“I realized later on that the misimpression that lupus is a debilitating disease should be corrected,” she said. “For me and many others, having lupus isn’t a hindrance to leading full lives. A lot of people with lupus are not only achievers. They’re also able to do the same things they did prior to being diagnosed.”

Just like other people who have diabetes, high cholesterol, or hypertension, those with lupus can manage their condition with the help of qualified doctors and adequate medication, she continued. Although the disease isn’t a death sentence, as most people fear, its symptoms shouldn’t be taken for granted, either.

“When you ask if lupus is curable, you’re implying that the patient will no longer need treatment thereafter,” said Salido. “Unfortunately, that is not yet the case. In the meantime, there are medicines and treatments we can give to help control the lupus so that patients can live normal lives.”

Many lupus sufferers, like Villar, can even get pregnant and carry their babies to full term. But it was a very delicate pregnancy for Villar, which required her and the then unborn Emma to be constantly monitored.

But the overachiever and hyperactive future mother didn’t change her routine while she was pregnant, she stressed. In fact, Villar, a health buff who used to run marathons, was even exercising daily.

“The problem was the lupus was attacking my blood,” she said. “Since the fetus was also taking up blood, I had to undergo frequent blood transfusions.”

Worse, her antibodies were also attacking Emma. To neutralize those antibodies, Villar’s doctors regularly gave her immunoglobulin taken from the blood of thousands of people and later synthesized.

“Initially, the immunoglobulin was given to me monthly,” she said. “As my pregnancy progressed, it was given to me more frequently.”

Newborn babies of mothers with lupus are also susceptible to neonatal lupus or, worse, a blocked heart. Thankfully, Emma, a premature baby, had none of these conditions.

But her parents weren’t taking any chances. Apart from visiting a cardiologist regularly as part of her prenatal care, Villar made sure that other specialists were on standby when she was giving birth just in case something was wrong with Emma’s heart.

Villar and her collaborators were also clear about one thing: Lupus, if left unchecked, could kill! In the seven months since Villar established the foundation, for instance, three of its more than 500 members have passed on.

What are the basic things a lupus patient should avoid? Being out in the sun too long is bad for her. Not only does it aggravate her rashes, which are among the most common symptoms of lupus, sunbathing could also lead to skin lesions and unwanted inflammation of the person’s organs.

Since it’s an autoimmune condition, lupus, as stated earlier, attacks some of the body’s vital organs, especially the kidneys. Their inability to properly process blood and other fluids in the body, in turn, causes the person to bloat.

Other common symptoms associated with lupus are severe joint pains, splitting headaches, visible mouth sores, and debilitating fatigue. Since a person’s kidneys and immune system are compromised, she is advised by doctors to avoid eating salty food and staying in crowded places.

“In some cases, I’ve encountered patients na parang nasisiraan ng bait (as if they were going crazy). Some suffer from anemia,” said Salido. Going a bit crazy is probably not farfetched because lupus also sometimes attacks the brain.

We’re using “she” to refer to a lupus patient for a reason. Ninety percent of those who acquire it are women.

The type of fatigue a lupus patient may feel isn’t your ordinary, run-of-the-mill fatigue based on her moods or trips. When she says she’s tired, it really means she’s tired, said Racaza.

Such bouts with debilitating fatigue and high fever may signal the start of what many sufferers dread as a lupus “flare” after weeks, even months of remission. What usually triggers these flares are stress, both physical and psychological, long hours at work, and overexertion.

Villar remembers the time before she was diagnosed when she couldn’t get out of bed because of sheer fatigue. She was in the dark about it because as a “Type A person, I was used to pushing myself as much as I could and to excel in everything that I did.”

“It can also mimic the symptoms and manifestations of other diseases,” said Racaza. “Some dismiss it as a bad case of rayuma (rheumatism), while those with rashes think that they’re just suffering from some recurring allergy. That’s why it’s very important for doctors to pick it up early and refer patients to proper specialists for further testing.”

In Villar’s case, for instance, it took her team of doctors almost a year to diagnose her. Before they found out, she was misdiagnosed as suffering from such esoteric-sounding conditions as glomerulonephritis, thalassemia, and autoimmune hemolytic anemia.

Since lupus affects various organs, a patient is also referred to by her rheumatologist to see other specialists like a nephrologist (kidney specialist), hematologist (blood specialist), and cardiologist, among others.

Although daily maintenance medicine for lupus patients can cost anywhere from just a few pesos, to hundreds, if not thousands of pesos, depending on the patient’s condition, tests and attendant treatments needed to identify and manage the condition are quite costly. Yet, many Filipinos are still clueless about lupus.

“When I was diagnosed, one of the first things I did after seeing a rheumatologist was to go to the bookstore to see if I could find titles about lupus,” said Villar. “There were none.”

She suggested to the bookstore to stock up on such types of books, never mind if they were written abroad by foreign doctors because there was a demand for them. Nothing came of it.

In the meantime, she ordered books on lupus online. Instead of waiting forever for locally written books that would never come, Villar decided later on that “I might as well do it myself.” She went ahead to initially write it. When she discussed her book project with Salido and company, Villar asked them to co-author the book with her. They readily responded.

Said to be the first book of its kind in the Philippines,Villar and her co-authors are also giving readers of the book something books written abroad normally don’t, which is hope through stories told by Filipino lupus sufferers themselves.

“It’s a complicated disease,” said Villar. “Even doctors, based on my experience, make mistakes identifying it. Having this book would be helpful not only for patients, but also for those in the medical profession who need to understand lupus better.”

No sooner had their book been launched than Villar began thinking of writing an equally informative version of Living Better with Lupus in Filipino. This time, she intends to distribute the books for free, especially in rural areas.

Villar related a case in the province, which happened to the mother of one the members of her foundation. The poor woman was suffering from painful arthritis for the longest time. They all thought it was just ordinary arthritis resulting from all age. Soon enough, she was also having terrible headaches.

“When they brought her to the hospital, she was diagnosed with lupus,” said Villar. “But it was too late because the condition had already damaged her brain. This was just one case, but there have been a lot of similar cases. Having a handy reference material about lupus, and one written in Filipino would be very helpful.”

Mel Cuevas: How I live with lupus

A former editor and now jewelry designer has been dealing with the ‘disease of a thousand faces’
By:  – Columnist / @Inq_Lifestyle
 / 12:04 AM May 13, 2014

Many people call it “the disease with a thousand faces.” Contrary to what others think, lupus is not rare; but the condition can be different from person to person.

Its manifestations and symptoms are as varied as the imagination allows, which is probably why many people know little or nothing about lupus.

An estimated 1.5 million people around the world are diagnosed with it—and some may not even be aware that they have it.

Doctors sometimes call it “the great pretender” because its symptoms mimic those of other illnesses. The name by which it is known alludes to the wolf (lupus is Latin for wolf); this is because some skin rashes caused by lupus bring to mind the bites of a wolf, or resemble the markings on a wolf’s face.

Most people mistake lupus as a skin ailment. But actually, there are many forms of it. One of them, discoid lupus, affects the skin in the form of lesions and scarring. But another form, systemic lupus erythematosus (or SLE), can affect any part of the body.

In a chronic, autoimmune disease like lupus, the immune system loses its ability to tell the difference between foreign substances like bacteria and its own cells and tissues. The immune system then makes antibodies that attack itself, causing inflammation to various parts of the body.

The only course of treatment is through anti-inflammatory and immunosuppressant medication. The cause up to this day is still unknown, but doctors attribute it to genetic factors that can be triggered by environmental factors like stress.

I have been living with lupus for almost two decades. At the time of my diagnosis, I didn’t know much about lupus, only that one of our former presidents reportedly passed away from complications of the disease.

Difficult to diagnose

Because the symptoms of lupus can be similar to those of other illnesses, it took a few years for my doctors to make the right diagnosis.

I can trace it at age 11, when I had a hemorrhage in my left eye. At that time, I was tested for leukemia, diabetes and other diseases you can name, but they couldn’t come up with any cause.

 

The next year, when my fingertips and toes started swelling, they thought it was rheumatoid arthritis. It was only a few years later, at age 17, when I started having chest pain, falling hair and a butterfly-shaped rash on the cheeks, that I consulted a rheumatologist. After some tests abroad, it was confirmed that I had systemic lupus.

To say that lupus changed my life is an understatement; aside from the occasional, unexplainable pain or fatigue that you get on your “bad” days, the changes in my physical appearance affected me the most, especially since I was diagnosed in my teens, an age when you can say that one’s self-esteem is at its lowest.

Weight gain and rounding of the face are just a few side effects of my medication (prednisone, a corticosteroid). My friends at that time can attest to how depressed I would get at my thinning hair, especially when I was put on cyclophosphamide therapy (a chemotherapy medicine) a few years later because of lupus nephritis (inflammation of the kidneys). I lost so much hair that I had to cut it really short. And even when my hair grew back, the texture was not quite the same as before.

Looking OK, feeling otherwise

Lupus affects people differently and it doesn’t always have outward manifestations. People assume that because I look OK, I am OK. Though I am thankful that I look OK, it’s also difficult for some to understand how I can feel well sometimes and not feel good the next day, and vice-versa.

It’s a difficult task, having to explain these things, when I can’t quite predict how and why things happen.

One thing I am very cautious of, sun exposure (prolonged sun and UV light exposure is said to trigger a lupus flare-up), would give my colleagues the impression during press junkets that I just didn’t want to tan, but actually, even if I wanted to swim and sunbathe all day, I couldn’t.

It was perhaps fate that I stumbled on a career in magazines, because it somehow made me cope in the only way I know how—with style. With lupus, I just had to accept that nothing in me can ever be normal, so I just created my own version of “normal.”

Even when I wasn’t feeling well, I used all the tricks I learned from friends and colleagues in the industry to help me look my best. I styled and accessorized literally, and figuratively.

At each stage, I have tried to do what I could and not dwell on those I couldn’t. Instead of thinking that health is the absence of disease, I have come to believe that health encompasses joy, good relationships, peace and the ability to survive change.

Like other stories I’ve read about people dealing with lupus, people cope in different ways. I found that the best way for me is a combination of traditional medicine and alternative routes like meditation, Reiki, acupressure, among others. The latter alternative routes help keep me balanced and help me cope with stress (studies show that stress also contributes to lupus flare-ups).

Frustrating

When you have lupus, it can be frustrating that it takes more energy to do things that most people can do easily. Because of my medication, I can be prone to infections, but I feel lucky that I’m able to work and do things that I love. My current work setup, which involves working for the family business, designing jewelry and writing, gives me the advantage of flexible hours. Compared to other people, my schedule doesn’t just include penciling in my appointments; I also have to consider resting hours to conserve my energy. I have to learn to listen to my body and know when to slow down or stop.

Today, my condition is stable, thanks to a combination of medicines and several doctors who have been taking good care of me all these years.

It takes a village, they say, but credit goes to several doctors (mainly, Dr. Gary Feldman, Dr. Tito Torralba, Dr. Sandra Torres, Dr. Rody Sy, Dr. Benjamin Lazo, Dr. Carlos Naval, among many others), as well as the support of family and friends, for keeping me in the best shape possible.

Sadly, lupus doesn’t get much awareness and support.

 

Warning signs of lupus

Lupus can mimic the symptoms of the common flu. See a doctor immediately if you experience some of these symptoms:

1. Joint pain

2. Swelling of the legs

3. Butterfly-shaped rash on the cheeks

4. Bluish fingers

5. Fever

6. Hair loss

7. Fatigue

Read more: http://lifestyle.inquirer.net/159747/how-i-live-with-lupus/#ixzz4uSiWwLfI

Living Better with Lupus is now available!

Living Better with Lupus is now available in both Fully Booked and National bookstores!!! Here is a list of branches where the book is available:
National Bookstore Branches:
SM Megamall
Filivest
SM BF Sucat
SM City Bicutan
SM Sucat
Southmall
Alabang
SM Las Pinas
Metropolis Mall
SM Muntinlupa
Greenhills
Cash & Carry Mall
Market Market
SM Aura
Greenbelt
Glorietta 1
Rockwell Powerplant
Mall of Asia
SM Valenzuela
Ermita
Harrison Plaza
Manila
Sta. Mesa
Tutuban
Victory
SM San Lazaro
SM City Taytay
Ortigas
Robinsons Pioneer
Shangri-La Mall
Fairview Terraces
Fisher Mall
Q Plaza
SM City Masinag
Ali Mall
Fairview
Farmer’s Plaza
SM North Edsa
Quezon Avenue
Sta. Lucia Mall
Superbranch – Cubao
SM City Marikina
Robinsons Metro East
Trinoma
Powerbooks Branches
Festival Mall
Megamall
Trinoma

*Book is located at the Health Section or New Title displays

 

Fullybooked 

Gateway Mall
Trinoma
The Fort High Street
Mckinley
Century City Mall
Conrad S Maison
Rockwell Powerplant
UP Town Center
Greenbelt 5
Mall of Asia

 

Other Outlets
Bookazine Megamall
Christian Ventures Magazine Stand – NAIA Departure Terminals
Bufini Alabang
Bufini Makati
Bufini Rockwell
St. Lukes Bistro
Makati Medical Center PepperJack
Manila Polo Club – Saddlebrown

Fighting ‘flares’ with flair

By Jullie Y. Daza
Photos by JYD

Although it is usually described as a rare disease, lupus can attack anyone young or old. Its preferred targets are 90 percent women in their child-bearing years, between 20 and 40, and while it need not be a death sentence, living with the illness means lifestyle changes, visits to the doctor, and a large dose of optimism, “setting goals and working hard to accomplish them to keep us moving forward.”

That is the message of a very busy, very active 30-something Emmeline Aglipay Villar, Diwa party-list congresswoman, wife of DPWH secretary Mark Villar, and mother of 18-month-old Emma Therese. Her book, Living Better With Lupus, aims to reach patients diagnosed with the disease and those who have it but are baffled by it or do not know they have it.

With its wide range of symptoms, from butterfly rashes to psychosis, athritic pains and depression (usually caused by the loss of self-esteem) and other organs besides the kidneys which could be affected, “even doctors make mistakes” in diagnosis and treatment. Lupus “flares” comes in cycles with differing degrees of frequency and intensity or weakening.

  • Dr. Geraldine Z. Racaza and Rep. Villar share the stage with Emma Therese.

Emmeline started her Hope for Lupus Foundation three years ago to share what she has learned from her experience, which first came to light 16 years ago. She wanted to understand what was causing her feet to swell and her hair to fall, but instead of moping and feeling sorry for herself, she carved out her goal: to raise awareness and save lives with prompt and proper treatment.

Co-authored with Drs. Angeline Magbitang-Santiago, Evelyn Osio Salido, and Geraldine Zamora Racaza, the book is available at National Book Store. One hundred percent of its proceeds are earmarked for the foundation, which conducts exhibits, meetings and other activities.

At the launch, the foundation presented doctors and patients who talked about living life with lupus. Her friends and family were present to provide moral support, including more than a handful who know what she’s talking about, being survivors themselves. As the book puts it, “There is still no cure for lupus but its symptoms can be managed, and remission is attainable.” If Emmeline can do it, her doctors say, so can the others. Her story is an example of how one can conquer lupus and live a full and fulfilling life despite the illness.”

Trisha Duncan: What It’s Like to Lose Your Hair at 19

Published on Sept. 8, 2017; Candy Magazine. Written by Trisha Duncan.

 

This isn’t the first time I’m talking about what it’s like to live with an illness. I’ve spoken about it as a speaker in talks to getting interviewed. I’ve even talked about it with someone curious about Selena Gomez’s famous disease, which I experienced first-hand, too. You see, I was diagnosed with Systemic Lupus Erythematosus or most commonly known as Lupus last 2015. It’s a chronic, auto-immune illness where my body’s immune system attacks its own tissues and organs, both the good and the bad cells. It is also known as “the great imitator” since it can imitate any illness until a test proves that it is indeed Lupus.

What started out as muscle and joint pains ended up as pneumonia and rashes on my cheeks, which the doctors called nephrologist, and later on, diagnosed as the big L. During my two-month stay in the hospital, I experienced a ton of scary illnesses—from having water in my lungs to my kidneys and liver almost shutting down. I even had to get a bone marrow aspiration and multiple blood transfusions among other medical procedures. But somehow, I managed to pull through with the help of my doctors, family, and friends. Lupus sounds scary because for most people it’s still a mystery and based on my personal experience, it’s horrifying. But while I was emotionally prepared for my medical battle, I wasn’t quite prepared for the aftermath of my war with Lupus.

When I was finally allowed to go home and recover, I had to go through a treatment that’s similar to chemotherapy in order to keep my immune system stable. I was happy to be home despite having to follow the doctor’s strict orders. But as my body continued to recover, my mind wasn’t quite ready yet. There were a lot of things that I couldn’t do and I couldn’t wait to go back to my old self. It broke my heart when it hit me that while I may be alive, I wouldn’t be able to live my life because my condition didn’t have a permanent cure and I have to be vigilant about my health at all times. Of course, losing my hair as an effect of my treatment took a huge toll on me, too.

Every morning when I woke up, I would see strands of hair all over my pillow. At first, I brushed it aside since it was normal for girls to have falling hair, but I noticed that my hair was growing thinner by the day and I was losing more and more locks. Eventually, my mom told me that I might have to shave my hair completely because of the chemo and the meds that I was taking. That realization hit me like a ton of bricks. I love my hair long and I’ve kept it that way for as long as I can remember and having to shave it all off broke my heart.

 

I was in denial for the longest time up until a big chunk of hair suddenly came off from the right side of my forehead.

Growing up as a model, it pained me to have to take a backseat from what I loved to do—my dream—because my lifestyle was heavily restricted and all my hair was falling off made me feel conscious about how I looked and made me lose my confidence in the process, too. When I finally agreed to have most of my hair chopped off, I looked into the mirror one last time and promised myself that once I’ve overcome this roadblock in my life, a new me will be on her way.

It took a couple of days getting used to having very little hair on my head. I’ve always had an elaborate hair care routine so it was a big change to suddenly go all low maintenance. When my mom finally allowed me to go out and go back to school, she asked me if I wanted to wear a wig. Although I missed my long hair really bad, I felt uncomfortable going out and about with a wig on. I thought that while it was good to maintain my old look, it’s better and stronger for me to accept my current situation and not hide or feel ashamed about my current look. While a bald head and various scars may look scary at first glance, for me it showed my strength.

 

They were my battle scars.

 

It wasn’t easy to go back and see all my pretty friends going out and having the best time of their lives while I was stuck at home recovering and trying to gain my confidence back. It hurt to be jealous, but I had to have faith. I know that one day I will be okay again and I just have to stay positive in order to get to where I want to be me.

It has been two and a half years since I got sick and lost my hair. Now, my hair is back to its long glory and I actually just had it dyed! My scars have healed and I feel healthy both physically and emotionally again! Acceptance starts from within and while I may have taken the long, hard road of self-pity and feeling broken, I can confidently say that my battle with the big L definitely made me into the strong, empowered woman that I am today. I’ve always been confident about myself, but going through my tough medical journey has shed a new light on what really matters most in life: to stay real and create our own version of what’s beautiful.