XDP: Breaking Social Misconception, One Smiley at a Time

26/03/2016

Remember Teacher Bert? The one interviewed in MMK as their feature for XDP? Well, he had undergone his Deep Brain Surgery last Monday! What a feat!

06/03/2016

One step at a time for a gentler world. Good way to start this week.

President Aquino has signed a law that will help persons with rare disease have better access to comprehensive medical care. Signed on March 3, the Rare Di

14/12/2015

Congratulations. One more signature.

Excited for mobilization.

With reports that there will be no bicameral proceedings for the bill, the President's signature is the only thing needed before the enactment of the proposed Rare Disease Act VYLH-Philippines congratulates the principal authors of the two versions, the Philippine Society for Orphan…

12/12/2015

Let us be reminded that in every case, there are patients and families who are suffering.

Hence, we shouldn't just treat the physical manifestations of diseases but the well-being of the patients. We also need to take away the anxiety of their loved ones.

Here's for all the medical practitioners and the future doctors.

12/12/2015

12/12/2015

Thank you, Maalaala Mo Kaya for delivering such powerful portrayal of XDP and how it affects the lives of the patients, their families, and the people around them.

Sharing this to help Bert, the patient featured in MMK, crowd fund. Let's help him raise the necessary funds to avail Deep Brain Surgery.

12/12/2015

SHARING THIS TO SHARE HOPE.
Yup, it can be managed! We can bring their lives and dignities back.

Surviving XDP... It feels great. Before, I was in bed not because I wanted to but because the disease forced me to. I had trouble eating, talking. Also, all I wanted to do was to sleep because it was only in sleep that the pain would go away.

- Patrick Acuna, MD. Undergone Deep Brain Stimulation, XDP survivor.

12/12/2015

I would like to invite you to watch Maalaala Mo Kaya later. They are going to show the story of a teacher who was stricken with XDP. Let's evaluate the facts of the disease and see really, what the patients and their families go through.

Be aware.

27/06/2015

'..., everything else is meaningless without love.' (Martin, SJ., 2015)

It started as a Biochem Project. Now, It's on a page in ( https://globalgenes.org/championsofhope/ ). And, definitely will never end there.

I had contracted Primary Complex, twice. I am fighting alopecia now. I know how to be sick. But, I will never know what Rare Disease Patients feel.

I don't know how painful the diseases are. I wouldn't know how they feel about themselves. That they can't do things normally. All I know is that, I can help them. If not by medicine development, but through the things I can do now.

I can wait until I finished med before I help them. But, there are people suffering now. Suffering not because it's their fault. Suffering because by luck, their genetic make-up told them so which, makes me feel so bad.

I had so many realizations during the course of developing the site and through field works. I have even met someone who survived XDP. I know that suffering is always there but it'll be better if we make those who suffer feel that they are not alone. That people are actually helping them.

Hope.

I dunno if in my lifetime, XDP or all the orphan diseases will be eradicated. But, I hope that I could do something for those who suffer. Something more than maintenance medicine. I want to at least give them hope. So that they can live. Live life. Live, that they may not fear that they are alone. That they can enjoy things for the first time or again. Because, the disease got something from. Their humanity. That they may never be called aswangs ever again. That they may be called rare disease patients but never orphaned.

I want to at least give their humanity back. That as humans we are social creatures. That we can stand for other people aside form ourselves.

I want to help them stand up and be a source of inspiration for others and most especially, their family who fights side by side with them. Not leaving them because they all love each other.

Through love, we are fired up to search for meanings. Meanings and callings that are still yet to discover.

Let us be reminded how Jesus went to help the lepers and the ostracized people. That through him, we can be able to go to margins to find the life and love we have not realized before.

This is for my family who taught me to stand up for something you believe in. I am standing for a gentler world.

This is for my friends and mentors who helped and are still helping me cultivate the passion to proceed.

This is for everyone who liked and will like the page I made ( XDP: Breaking Social Misconception, One Smiley at a Time ). Those who voted for my pitch and those who were touched by my rappler article.

Global Genes™ would like to congratulate the following 2015 RARE Champion of Hope Nominees. These individuals and organizations have been recognized by their peers because of their extra...

26/06/2015

Due to a rare disease, a mother orphaned her baby.
Rare diseases should not be orphaned.

Mother was so embarrassed with her premature infant's appearance so she left her to die.

25/06/2015

Public health should mean that no one is deprived of medical assistance.

25/06/2015

Thank you, Sunshine Foundation for reaching out to the people of Jamindan,Capiz. We are surely thankful of the medical assistance.