2009: The year that was

If the past cannot teach the present and the father cannot teach the son, then history need not have bothered to go on, and the world has wasted a great deal of time. ~Russell Hoban

With the year almost over, it is always good to look back at the year that was. To move forward, we need to look back and see what needs to be avoided, what needs to be improved and what needs to be done.

This year was both full of challenges and blessings. In the past months, we lost at least four patients including one emerging leader Percival "Rex" Retuya. While their deaths all brought sadness to their loved ones and all of us in the local hemophilia community, I 've been mostly affected by the untimely demise of Rex. In the past two years that I've known Rex, I admired his resolve to help others despite his poverty. He had been among those actively pushing others to form a support group and visit those who were sick. He initiated a livelihood program for bleeders so that they would not have to be a burden on their families.

He was one of those patients who, despite their condition, tried to rise above the challenge no matter what. (Photo: Rex Retuya's wife and daughter at his wake.)

In May, HAPLOS, the oldest hemophilia group in the Philippines, elected a new set of officers. The new officers promised to work harder. It's never easy to run an organization with so much needs to address. And I pray for strength and wisdom for all the officers and members. My only wish is for more members to become active, for new volunteers to rise up, for everyone to work together for common good.

In June, a new group came into being - the Blood Brothers of the Philippines. Developments like this should be welcomed. There is just too much work to be done for a single organization to address all concerns.

Personally, I have so much aspirations for bleeders in the Philippines. Foremost of which is the institutionalization of hemophilia care in the country. If bleeders in other countries succeeded in getting government support, I do not see any reason why we cannot. But this can only be achieved if visions are put into action. A wise man once said, "People perish for lack of vision." Vision guides us to where were are going. It is the light to our path. Without it, we cannot expect to get anywhere.

This year, I have chosen to be more of an outsider. This doesn't mean though that my desire to help bleeders have dwindled. Not at all. But by being an outsider, I see things more objectively and it enabled me help more people. I've gained more friends this year as I reach out, in my own little way, to bleeders all over the Philippines.

Just last month, I met a young couple -- Ian and Yuen -- parents of cute baby boy Caleb who was diagnosed with hemophilia just shortly after his birth. It has not been easy for them and I pray that their bond will strengthen as they raise their angel Caleb together.

(Baby Caleb, photo courtesy of his cool granny Irene Alejandro.)

On a more personal note, the impact of von Willebrand disease has become more pronounced this year when I started to bleed more than ever. After some tests, doctors found that I have a thickened uterus and myoma. My OB-Gyn recommended a biopsy operation but because of my bleeding disorder, I could not undergo an invasive procedure. (My mother died while undergoing biopsy operation.) Based on my own research though, thickening of the uterus wall is usually associated with continued profuse bleeding. So top of my wish list is to see an expert on women with bleeding disorders, which I hope to be able to finally do in February 2010.

Thankfully, Star had lesser bleeding episodes this year. Though her monthly periods started last September, we are grateful to God that it has not been as profuse as we expected.

2009 had been an eventful year -- both good and not so good, that is. But as the Good Book says, in all things God works for the good of those who love Him, who are called according to His purpose. Despite the pains, hurts and disappointments we experienced this year, we have so much to thank God for -- the lessons learned, new friends gained, little successes, better health, more strength, among so many other things to be thankful for. Sometimes, blessings come in little packages. But big or small, we must thank God for it all. As we face another year, I pray for everyone in the bleeders' circle to have more strength, better health, better relationships and more blessings!

Life according to Star

I was cleaning up the children's things after lunch today when I found an essay written in an intermediate paper. It was Star's. Curious, I stopped to read it. It was a touching journal of what has been going through. Though simply written (she was 8 when she wrote it), I felt proud by how our family's "baby" look at life. She has always been a source of many lessons for us. Her child-like faith taught us to be stronger. She may not always understand what is happening around her but she doesn't worry. She knows many people pray for her, and for her, that is enough assurance that things will get better. With her permission, I am posting her article below. She also posted it in her blog. I hope other children who are going through a different childhood like Star will have the same positive outlook in life. Things will be better, that's for sure.


WHEN I WAS BORN
by Star Echavez

When I was born I didn't know anything. I just knew how to cry and eat. After six months, I went to school. I was always sick since I was born. I always went to the hospital. I didn't know what was happening around me. I didn't care. I grew up unhealthy (kind of) because I was always sick. I still get sick up to now. I always have blood tests. But I didn't know why. Now that I'm bigger I know the reason.

Last year when I was grade two, I always had nosebleed. I had to go to the school's clinic when I had nosebleed. My life wasn't easy for me -- always going to the hospital and always absent from my class was very hard, because I love going to school.

We have a great school. It has great teachers especially when I was grade two. I like Teacher Christine because she's always happy and she always makes us happy.

We didn't know me and my mom have a disease -- the "von Willebrand's disease." We have type 2M. I still didn't care. Now that I'm grade 3 I still don't care about the disease. I'm not better but I will be. Many people pray for me. Now I'm healthier but I still get sick. But this life (my life) gets better and better. THE END

Death from von Willebrand Disease

Ever since we found out that von Willebrand Disease runs in our family, we have been doing, though in our own little way, an awareness campaign to let people know what this disease is. I've been blogging and writing about our journey with von Willebrand. Everyone in our family -- my husband, children and siblings -- have been sharing it as well with people in their circles.

Because Star seems to be "normal" except for her frequent nosebleedings and lately, vomitting of blood, we really didn't find any urgency to be part of a bigger group. Until two weeks ago.

While we were waiting for our turn for Star's transfusion, I made chit-chat with others in the doctor's clinic. Most of the patients, I found out, were afflicted with leukemia. The parents -- about five of them -- knew each other. Apparently, they have a support group and they "borrowed" medicines from each other. "We have to order the medicines abroad," one mother told me. Fortunately, she said, the parent of one of her child's co-patients is an OFW so they can easily ask the parent to buy for the group.

Curiously, one lady came in the clinic without a child. Since the waiting room was just small, I engaged her as well. Do you have a patient? I asked her. Yes, she replied. He's in the ICU. Whoa! My mind started to run a list of people we could seek help from for the patient. So, the reporter in me started to ask questions. What's the child's case? How old is the child? Is she the mother? How can we help her?

It turned out that she was working for an orphanage and the boy she was caring for had von Willebrand disease. He was 4. He had been admitted to the ICU after bleeding profusely for many days. Like us, they had been looking for Koate and thankfully, because of the number given to me, we were able to find it. Unknown to me, another little soul needed Koate even more urgently than Star.

I was speechless. It was only then that Star's condition sank in. Suddenly, I felt so blessed. Silently I thanked God for the grace that He has given us, especially to Star.

Only by God's grace has Star been able to have a semblance of normalcy in her life. Despite her frequent bleeding, she still enjoys pretty much what children her age do. In fact, she's quite active. She's into ballet, Angklung, piano. She loves to trek. And hopefully, she'll learn to bike too.

My heart sank when I heard what the boy went through because of vWD. Very similar to Star, only more severely.

When it was our turn, I told Star's hematologist that I wanted to lobby with our government to have at least one government facility for bleeders in the country. In other countries, bleeders get free transfusion and other medical needs. Having a bleeder in the family is not easy. One transfusion can easily cost at least P25,000. The heavier the patient becomes, the more plasma she/he needs. Generally, it is more costly for women bleeders especially once they have their monthly periods. One mother of another vWD patient told me they spend at least P50,000 per month for her daughter's transfusion.

In a third world country like ours, health is the least priority. Sadly, there are no facilities for vWD patients here, not even in the best private hospitals. Let alone in government hospitals. Even for families of patients, maintaining a monthly transfusion can be prohibitive. One mother told me there are times they could do nothing but just pray for their daughter because they could no longer afford her transfusions.

A day after my encounter with the little boy's caregiver, Star's hematologist texted me that the little boy passed away. My heart broke. What a senseless death!

The boy's death jolted me. We cannot take this disease lightly anymore. We have to do something for all the bleeders. We cannot just focus on our daughter and go on with life not caring for other bleeders. Maybe God allowed this disease in our family so we can feel how others feel. There are many other bleeders out there. We have to help each other.

Kindness abounds -- THANK YOU!

To all who reposted my post and forwarded my email, THANK YOU!

Indeed, kindness abounds. Through the forwarded posts and emails, we were finally able to get in touch with an importer who helped us secure the blood factor that Star needs.

It turned out that Koate and Alphanate are from human plasma and both are regulated products. We cannot buy any of the two ourselves. They can only be acquired through a hospital or a hematologist.

God willing, Star will be able to have her transfusion by Monday.

To all who prayed with us and gave words of encouragement, THANK YOU!

It is the prayers of others that makes us strong amidst difficult times.

I believe all things work together for good and surely God has a reason for allowing this bleeding disorder in our family.

This is a hereditary disorder which caused the life of my mother. Thankfully, with the modern technology, Star may be able to live a "normal" life.

Please keep Star in prayers. She is a bit scared about the transfusion. But she is excited too. Her bleeding has caused delays in our travel (we were supposed to leave today.) On Tuesday, we will be off to our long-awaited family vacation. =) God is good all the time!

God bless you all and return your kindness with more favors.

Help! Star needs blood transfusion!

Hi everyone!

Anyone who knows anybody working with Bayer or any pharmaceutical company that sells blood by-products? Or where we can buy blood factors Koate or Alphante?

Koate and Alphanate are anti-hemophelic concentrates that can help regulate the clotting factor.

Our 9-year-old daughter Star needs to have blood transfusion ASAP to stop her frequent nosebleeding. As I have shared in my past posts (here and here), Star has a bleeding disorder called Von Willebrand Disease. It's a genetic bleeding disorder where the platelets are either defective or not functioning well.

Lately, Star has been nosebleeing more frequently again, and unlike in the past, there are now big blood clots. This afternoon, there were about four of those.

Thankfully, results of her CBC and platelet count today are good. No anemia. Platelet is high which means her "good soldiers" are fighting. But her bleeding has to be addressed, otherwise, it will lead to more complications. However, Koate or Alphante are not available in the Philippines. But in case you know of anyone in the pharmaceutical companies, they might know how we can buy them.

Both of these products may be available in Hongkong or Singapore. For those with kind-hearted friends or relatives in those areas, can we ask for assistance in finding out how much this costs and if they are willing to facilitate our purchase of the products?

Please PM me or email me at andrea.echavez@gmail.com.

Thanks a lot and God bless!

Is there a bleeder in the house?

I've blogged many times about the bleeding disorder in our family which affects our 8-year-old daughter Star the most. Since Star was diagnosed with von Willebrand Disease, we have taken a personal crusade to inform people about this disease and prevent senseless deaths like my mother's. I hope you can help me spread this blog especially to doctors and parents. Who knows, through this you'll be able to save a life. For those with a similar experience, please PM me or email me.

o 0 o

Is there a bleeder in the house?
By Andrea Trinidad-Echavez

Does your child easily bruise or frequently nosebleed? Do you wonder why he or she always gets bloody while brushing teeth?

Don't take those seemingly harmless signs for granted. They might just be symptoms of something else.

For years, my husband and I had been looking for answers to the condition of our youngest daughter, Star.

Catching colds from her older siblings few days after she was born, we were alarmed when blood started dripping from Star's tiny nostrils barely before she turned a month old.

At first, we thought hers was only a bad case of colds. Nevertheless, alarmed of the sight of blood, we rushed her to the emergency room. The pediatrician ordered blood work-ups on Star. When the results came, there was nothing significant in the findings except that she was anemic. She was given an extra dosage of iron.

As she was growing up though, Star's nosebleedings became more frequent. It came anytime of the day. Initially, we thought it had something to do with the temperature. But even when we confined her inside an air conditioned room on humid days, she would still bleed. It didn't also matter whether she was indoors or outdoors, or playing, sitting down, or sleeping.

Over the years, we got used to her teachers, school nurse or even school service driver calling us to express concern over her frequent nosebleeding. (Star started going to school at 6 months under UP Diliman's Infant Development Program of the Child Development Center.) We could only assure them that we had been seeking medical help on her case. She had undergone so many work-ups, ranging from blood tests to ENT (ear, nose, throat) checks and even neurological tests. Yet, specialists could not see anything wrong with her except that she was perennially anemic.

Last year though, Star's nosebleeding came at an alarming frequency – this time, almost daily. Sometimes, it would come up to four times in a day. After a series of trips to different specialists, we were already becoming frustrated. By then, Star was nosebleeding for almost a month in a row.

Family of bleeders

We had all the reasons to be alarmed. Bleeding runs in our family. My mother literally bled to death while undergoing a minor surgery. This, even after going through routine blood tests prior to the operation. The 10 bags of blood transfused on her didn't help at all. Few hours after she entered the operating room, she expired on the operating table while the doctors were trying to stop her bleeding. She was only 51. An uncle, my mother's older brother, almost died of bleeding while undergoing tonsillectomy. My eldest sister suffered hemorrhage and almost died during her first childbirth. My other older sister had two or three miscarriages.

Every time we bring our daughter to a doctor, I would give a rundown of our family history. Yet, it didn't seem to help pin down where Star's nosebleeding came from. Finally, we were referred to a well-known hematologist who specializes on hemophilia.

Von Willebrand Disease

"I suspect your daughter has von Willebrand Disease," Dr. Mary Chua, founder of Hemophilia Association of the Philippines for Love and Service (HAPLOS), told me after I gave her Star's and our family history.

Von Willebrand Disease, she explained, is a rare clotting disorder similar to hemophilia. While hemophilia is considered a "men's disease" because it occurs primarily among males, von Willebrand Disease can affect both males and females.

Rare genetic disorder

According to kidshealth.org, von Willebrand Disease is the most common bleeding disorder. But bleeding disorders, in itself, is considered rare. Von Willebrand Disease, for instance, affects barely 1 percent of the population. In the Philippines, there are less than 20 known cases.

People born with the disease may either have defective von Willebrand factor, low levels of von Willebrand factor or no von Willebrand factor at all.

Von Willebrand factor is a protein in the blood that is necessary for clotting. Without it or with defective von Willebrand factor, the blood takes longer to clot. This causes abnormal bleeding, and in the case of my mother, could even lead to death from blood loss.

No diagnostic facilities in the country

Unfortunately, there are no facilities in the country that can diagnose von Willebrand Disease. We were told the tests are quite complex that it needed special reagents and machines. The technology is only available either in Hongkong or Singapore in Asia. We were advised to bring our daughter to Queen Mary Hospital in Hongkong.

We flew to Hongkong November last year. The procedure was as simple as regular blood tests, only more blood samples were taken. Since von Willebrand Disease is a hereditary disorder, the doctor also took blood samples from me.

Because of the intricate procedures in the tests, the diagnosis came out only in March this year. It confirmed Dr. Chua's suspicion. My daughter has von Willebrand Disease Type 2M. And I have it too.

Types of von Willebrand Disease

According to the World Hemophilia Federation, there are three main types of von Willebrand Disease – Type 1, Type 2 and Type 3.

Type 1 is the most common form of the disease, accounting for approximately 80% of all cases. It involves a deficiency of the von Willebrand Factor.

Type 2, of which there are four subtypes – Type 2A, B, M and N, involves a qualitative defect of the factor wherein it does not function properly.

Type 3, on the other hand, involves a near or complete absence of the factor, and is the most serious type.

Diagnosis

Diagnosing von Willebrand Disease is not easy. That is why a lot of patients live with it for many years before finding out that they have it, if at all. Many doctors may not even be familiar with it.

In our case, we have sought out at least 10 specialists over the past seven years, ranging from hematologists, ENT, neurologist to nephrologists, if only to find out what was causing our daughter's nosebleeding.

Family history

Unlike hemophilia, von Willebrand Disease cannot be spotted in just a few blood tests. Oftentimes, it is misdiagnosed because many doctors are not familiar with it. For instance, a person with a low platelet count because of Type 2 von Willebrand Disease could be diagnosed with leukemia. Or a woman with heavy, prolonged menstrual bleeding because of von Willebrand Disease, who has not responded to hormone therapy, could be advised to have a hysterectomy.

In some cases, nosebleeding could be construed as deviated septum (physical abnormality in the nose) or that it could simply be brought about by either extreme or sudden change in temperatures.

Dr. Chua said this is where clinical history plays a crucial role. Most documented von Willebrand Diseases cases in the Philippines were identified through their clinical history, such as the symptoms shown by the patient. These may include frequent or prolonged nosebleeding, easy bruising, gum bleeding, prolonged or heavy menstruation, and prolonged bleeding during surgery, accident, medical or dental procedures.

Family history could also be very helpful in identifying possible von Willebrand Disease patients. In our case, my side of the family history helped Dr. Chua identify my daughter as a probable patient.

Laboratory tests are necessary to know what type of von Willebrand Disease the patient has so that appropriate treatment could be administered.

Not fatal but…

Fortunately, von Willebrand Disease is not as fatal as cancer, leukemia or other blood diseases. People affected by the disease may still live a normal life for as long as they receive regular treatment.

Treatment can vary from nasal spray, oral medication or blood transfusion depending on the type of von Willebrand deficiency.

But patients are normally advised against engaging in high impact activities that may cause injury. Because of the clotting factor deficiency, deep cuts may take long to stop and worse, may lead to death by blood loss like my mother. Von Willebrand Disease patients are also prone to internal bleeding.

In von Willebrand Disease, according to Dr. Chua, it's the patient's quality of life that suffers. "They have to contend with constant bleeding. They may feel weak or they may acquire other diseases as a result of the low immunity," she said.

Prior to any medical or dental procedure, patients are also advised to see their hematologist for proper treatment to regulate clotting and prevent blood loss.

So, if you suspect someone in your family has a clotting problem like von Willebrand Disease, don't waste time. See a hematologist. It's always better safe than sorry. (ate)

God is good all the time!

Now faith is being sure of what we hope for and certain of what we do not see.-- Hebrews 1:11

After three long months of waiting, we finally got the results of the tests Star and I had in Hongkong. And it's not so good. For those who just stumbled into my blog, our youngest daughter had nose bleeding episodes since she was a baby. Last year, it became so frequent (almost daily) and after many trips to different doctors we finally found a hematologist who told us that our daughter might have Von Willebrand's Disease. VWD is a hereditary bleeding disorder similar to hemophilia. Though considered the most common bleeding disorder, it happens to about one in three million.

As you probably guessed by now, the results showed that both me and my daughter have VWD (Type 2M). While only my daughter was advised to take the tests, the doctor in Hongkong decided test me as well since VWD is hereditary.

We were advised to go back to Hongkong for new tests as well as for treatment. Since it's hereditary (which was likely the cause of my mother's death at 51), my husband and I are praying to be able to have our two other kids tested soon.

The results came at a time when things seemed to be so quiet. So quiet for comfort, in fact, that I had a feeling something was on the way. And because of that, I had been "negotiating" with the Lord the past few weeks not to make it so hard. Really, when things become quite comfortable, I get uneasy because I know the Lord is just preparing to take us to another level.

We've been through a lot to still doubt God's faithfulness. He is our Jehovah Jireh who provides for all our needs. He is our Jehovah Rapha, our Healer. And while it's a bit prohibitive for us, on a human point of view, to be perennially going abroad for treatments, we never doubt He will provide for us in whatever way He wills -- including divine healing. Nothing is impossible with Him.

It's such a comfort (and a privilege as well) to hear from a great man of God, Rev. Abu Bako, who recently came to give exhortation on the mandate of Christians in nation building. As Christians (and therefore God's representatives), Rev. Abu said, we should do what God mandated man to do -- have complete authority over the earth.(Genesis 1:26)

So what's the connection between nation building and our disease, you might wonder?

Well, being parents to three premature kids who are always in and out of the hospital, my husband and I have been lamenting how bad our health system is. Even government hospitals can be prohibitive for people who are earning minimum wages.

When we were told our daughter might have VWD, we found out that even the best hospitals in the country don't have facilities to diagnose or treat VWD patients. Even our supposed National Hemophilia Center can't diagnose VWD. Which brings to the point, what if those afflicted can't afford to go abroad for treatment or even diagnosis? Will they just die, like my mother?

I'm sure God allowed this to happen to our family for a good reason. It might not be His perfect will for us, but maybe He is looking for people He could use. Star's hematologist said we should start to lobby with the government that facilities for VWD be made available here. We're praying for God's guidance on this. Whatever it is, may His will be done.

When He allows us to face challenges, He also gives us strength to carry on. Thank God for gifting us with very supportive families and friends who've been faithfully walking with us. As I've said over and over, we wouldn't have survived if not for the prayers and support of the people around us.

Surely, God has planned to prosper us and not to harm us, plans to give us hope a future.