Aired (April 5, 2025): Higit sa kuwento ng sakit, ito ay kuwento ng malasakit at pag-asa.
Kilalanin ang mga indibidwal na may isang bihirang sakit na tinatawag na X-Linked Dystonia Parkinsonism o XDP— isang sakit na hindi lamang nagpapahirap sa katawan, kundi nagdudulot din ng stigma at maling pag-unawa.
Thumbnail Text: Ano nga ba ang sakit na X-Linked Dystonia Parkinsonism o XDP?
Kilalanin ang mga indibidwal na may isang bihirang sakit na tinatawag na X-Linked Dystonia Parkinsonism o XDP— isang sakit na hindi lamang nagpapahirap sa katawan, kundi nagdudulot din ng stigma at maling pag-unawa.
Thumbnail Text: Ano nga ba ang sakit na X-Linked Dystonia Parkinsonism o XDP?
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FunTranscript
00:00How if in the middle of your life, in the corner of your success,
00:13if you ever feel like you can hold the world,
00:18in a blink of an eye, it will be like this.
00:31In a barangay in Rojas City, Capiz,
00:35I met two siblings who have a different kind of illness.
00:41How are you?
00:44What's your name?
00:46Ariel.
00:47Ariel, are you okay?
00:49Yes, I have a headache.
00:50He has a headache.
00:52Doesn't your neck hurt?
00:54No, I'm okay.
00:55Yes, he has a headache.
00:58Doesn't your neck hurt?
01:00No, I'm okay.
01:01Are you okay?
01:03Are you okay?
01:04I'm okay, ma'am.
01:06Wait, what if he gets a headache?
01:10I'm okay, ma'am.
01:11Do you want to go home?
01:12Yes.
01:13Does it hurt?
01:14Does it hurt?
01:17Are you okay?
01:19Does it hurt?
01:20Does it hurt?
01:21No, it doesn't.
01:22It doesn't?
01:24Huh?
01:31The siblings, Artemio and Ariel, have X-linked dystonia parkinsonism, or XDP,
01:40a brain disease that was first discovered on the island of Panay.
01:54The problem with dystonia is that it's an involuntary movement.
02:02The doctor told us that it's tiring because it's like you're continuously working out.
02:10Your body is constantly moving, even if you want to rest.
02:15Although this disease is a brain disease, the mind of a person with dystonia is not affected.
02:23It's normal to think, but you can't control your body.
02:33Ariel used to be a tour guide in Boracay.
02:36Her body was full of energy.
02:39But now, she's like a child who's learning to walk again.
02:45Oh, that's great!
02:47Hold this, ma'am.
02:48You might get sick.
02:54Can you do it?
02:55You're strong.
02:56You can even go diving.
02:58Compared to her brother, Artemio is happy and playful.
03:03Where are we going?
03:04Boracay.
03:05Do you want to go to Boracay?
03:06Let's go to Calibum.
03:07Huh?
03:08Calibum?
03:11While we were walking, I found out that Artemio has always been a scuba diver.
03:17He's agile, good at swimming, and fearless.
03:21Hey, don't fall!
03:23That's why, no matter how weak his body is, I can feel the strength of his heart in every step.
03:33Stop.
03:40Can you stand upright?
03:41No.
03:42Do you want to stand upright?
03:43No.
03:44Let's try.
03:46That's it.
03:48Stop.
03:49Stand upright.
03:51Can you walk?
03:56Are you tired?
03:57I'm tired.
03:58Let's go back.
03:59Let's go back.
04:00Let's go around a bit.
04:03Suddenly, this illness came.
04:07In Artemio's case, he was hit by dystonia while he was underwater.
04:13Suddenly, he couldn't control his neck.
04:17So, what happened when you were underwater?
04:21Did your head suddenly move?
04:23I suddenly stood up.
04:25That's dangerous, brother.
04:27Yes.
04:28Then, I took off my sandals.
04:30Yes.
04:31I decided to stay here for a while.
04:34Yes.
04:35But it seemed like it moved.
04:36It moved.
04:38His condition worsened until his entire body was affected.
04:43I just accepted it.
04:46You just accepted it?
04:47Yes.
04:48I had nothing else to do.
04:49I just stayed here.
04:55If Artemio was able to recover quickly,
05:01it's not his family.
05:04At the time of his weakness, his wife left him.
05:18Their brother, Elsa, sacrificed herself to take care of his two brothers.
05:33This was not the first time Elsa took care of a child with dystonia or XDP.
05:41Their other brother, Arnel, also suffered from the same illness.
05:46Elsa also took care of him.
05:49I can see that he's having a hard time.
05:52Even I, I cry.
05:55I don't want to.
05:56But when you see your brother having a hard time,
06:00you just want to let him rest.
06:06His brother, Arnel, only lived for two years.
06:10When he died in 2018,
06:14his other brother, Lalaqui, also suffered from dystonia.
06:19Now, I ask myself, why?
06:22All the problems, responsibilities,
06:26I tell my mom, I can't take it anymore.
06:29But when I tell my mom, when I see her,
06:36she says, he's having a hard time.
06:38He's having a hard time taking care of him.
06:39He might die soon.
06:41I have no choice when it comes to taking care of him.
06:50Dystonia's X-link is not contagious.
06:54It's not a curse either.
06:57But it's contagious.
06:59So, this illness is contagious to your mom?
07:02Yes.
07:03That's why it's X-linked.
07:04Because when the mother becomes a carrier,
07:07the baby boy is affected.
07:09But the woman doesn't suffer from dystonia?
07:11She doesn't suffer from dystonia.
07:12Typically, she doesn't suffer from dystonia.
07:15Even if the woman is a carrier,
07:16this illness only occurs in men.
07:20When a man gives birth with dystonia,
07:23his female child will become a carrier.
07:27The symptoms of the illness won't be obvious to the woman.
07:31But when a man gives birth with a female carrier,
07:36the possibility of dystonia is obvious.
07:40The illness of X-DP starts around 30 to 40 years old.
07:47You won't see it as a child?
07:48No.
07:50It doesn't manifest to children?
07:52So, if a man is 30 years old,
07:55there's a possibility that he already has a wife?
07:57It's possible.
07:59This is the prime of life.
08:01So, it's still possible?
08:02Yes.
08:04This is what we want to help.
08:08Because these are the men who should be working at 30 years old,
08:13at the peak of their career,
08:15at the peak of their lives,
08:17to have a wife,
08:19to have children,
08:20to have a father,
08:21to be the breadwinner of the family,
08:23it's halted because of their illness.
08:27In Elsa's family,
08:29because her grandfather had dystonia,
08:32her mother became a carrier of the illness.
08:35And this is what her mother passed on to her three sons.
08:41Because her parents are already old,
08:44Elsa is the only one who is expected to take care of her brothers.
08:51So, despite their hardships,
08:55please feel, Artemio,
08:57they are still lucky.
08:59They are lucky to have Elsa.
09:12How long will you take care of them?
09:15Until...
09:18I can take care of them until they pass away.
09:20I can do it.
09:24I can do it because...
09:31My siblings are my responsibility.
09:34I can't say that...
09:37You don't want to?
09:38Yes, I don't want to.
09:41There is still no cure for dystonia.
09:45But there are medicines that can help
09:48to relax the muscles
09:50and prevent it from moving too much.
10:01The doctor showed me
10:03what Artemio looked like in 2022
10:06before he took his medicine.
10:09He can't speak.
10:11He can't stand properly.
10:13He can't sit properly.
10:16But now, he can speak.
10:19He can walk.
10:20He can stand.
10:21He can sit.
10:22That is the beauty of our symptomatic relief medicines.
10:25It really helps them.
10:29The medicines are free of charge
10:32at Sunshine Care Foundation,
10:34an organization started by Geraldine Sunshine
10:37and her brother, Dr. Patrick Acuña.
10:42The reason why we're so involved in the community
10:45and on the ground
10:46is because my brother has XDP.
10:49And he's a doctor.
10:51So, he is both a doctor and a patient.
10:54So, he really understands the situation of the patient.
10:58But he himself is an inspiration to the patients.
11:02Dr. Patrick was only 30 years old
11:05when he had dystonia.
11:08Like Elsa,
11:10Geraldine also experienced
11:12taking care of her brother.
11:14So, she established a foundation
11:17that provides free medicine and support
11:20to families with dystonia.
11:23She also gathered
11:25some of the best doctors in the world
11:28to find a solution
11:29to this disease.
11:31And I tell our patients and families,
11:34I will not leave you.
11:36We are in this together.
11:39Because we are the ones who are most motivated
11:42to find a cure.
11:43So, for us, the important thing is
11:46care and cure.
11:48With the help of their community advocates,
11:52they went to the island of Panay
11:55to find other patients with dystonia
11:57and provide them with help.
12:02Elsa is one of those
12:05who volunteered in Sunshine Care
12:07as a community advocate.
12:13Aside from her siblings,
12:16Elsa also takes care of
12:1813 other patients with dystonia.
12:27Oh, my God!
12:29Hi, Kuya.
12:33Are you okay?
12:35Have you eaten?
12:40Huh? What?
12:43Yes, I am Kara David.
12:46Rene has had dystonia for three years.
12:49As he was getting older,
12:51his condition worsened.
12:53His condition worsened
12:54as he was getting older.
12:56Now, he can no longer
12:58shut his mouth.
13:00It is hard for him to eat
13:02and speak.
13:06That is another effect of dystonia.
13:10Sometimes, even the muscles
13:13in the lungs
13:15also suffer.
13:17So, there are patients with dystonia
13:20who have difficulty breathing.
13:21They also have difficulty sleeping.
13:25Kuya gets tired easily.
13:28Earlier, he was able to walk
13:30for a while.
13:32Now, he is having difficulty breathing.
13:34Just think about it.
13:36The muscles in his body
13:38are continuously contracting.
13:41He is straining.
13:43His muscles are overworking.
13:46That is why he gets tired easily.
13:48Part of Elsa's job
13:50is to monitor the blood pressure
13:52and weight of the patients.
14:03She also needs to know
14:05if they are depressed
14:07so that she can give them
14:09a helping hand.
14:11Elsa is also able to
14:13monitor the blood pressure
14:15and weight of the patients.
14:18Sensitive question, sir.
14:20Hi, Abby.
14:22Are you depressed?
14:24Have you asked the doctors?
14:26Do you have any thoughts?
14:29No.
14:31I'm just a child.
14:33Wow.
14:35He doesn't have any thoughts.
14:37He's just a child.
14:40That's when I found out
14:42that Rene has a wife and child.
14:44He used to be a driver in Manila.
14:47But now,
14:49he's just a child.
14:51Rene was silent
14:53while the children
14:55were watching a movie.
14:58I just found out
15:00that his wife left him
15:02after he got sick.
15:05You have four children.
15:09This is your son, Abby.
15:11But despite his suffering,
15:15Does it hurt?
15:17No.
15:19Your children?
15:21Yes.
15:24Your children?
15:26Yes.
15:29Why do you feel sorry
15:31for your children?
15:33You take care of them.
15:42That's how fathers are.
15:44Even when they are sick,
15:45they still think of their children.
15:47Yes.
15:49You take care of them now.
15:59Aside from Rene,
16:01his brother, Lalaque, also has dystonia.
16:08According to the doctors,
16:10dystonia is not 100% curable.
16:13There are times
16:15when the carrier
16:17can't pass it on to his children.
16:20But the parents
16:22who take care of Rene
16:24are still worried.
16:26So you also have a son, Lalaque?
16:28Yes, I have two.
16:30I always pray
16:32that it won't happen.
16:35That it won't happen?
16:37That it won't happen
16:39to your children?
16:41Yes.
16:42But it's just 50-50.
16:44But even so,
16:46even so,
16:48we can see
16:50how tired they are
16:52and how difficult it is.
16:54Yes.
16:56That's why it's so difficult
16:58in that situation.
17:00So I hope it won't happen.
17:02I hope you won't
17:04pass it on to your children.
17:06Yes, I hope it won't happen.
17:13Sometimes,
17:15how emotional it is.
17:17Like Mean,
17:19Elsa is also afraid of dystonia.
17:21Especially,
17:23seven men in their family
17:25were affected by this disease.
17:27There's dystonia.
17:29Elsa's grandfather has dystonia
17:31and her grandmother is a carrier.
17:33Of their ten children,
17:35two had dystonia
17:37and all of the women
17:39became carriers.
17:40Elsa's cousin
17:42is her next patient.
17:45Where does she live?
17:47She doesn't live here.
17:49She left.
17:51Where is this?
17:53These are chickens.
17:55Ah, this is her.
17:57Ah, she's alone here?
17:59Yes, she's alone here.
18:01Ah, and she's just being visited.
18:03At first glance,
18:05you wouldn't think
18:07there's a room in this cellar.
18:10Yes.
18:14She was just left
18:16by her parents
18:18to live alone.
18:20She's just being provided
18:22with rice and vegetables.
18:28Gilbert is only one
18:30affected by dystonia.
18:33But it's still hard for her
18:35to move,
18:37especially balancing.
18:41It's been six years
18:43that she's been
18:45carrying this illness alone.
18:48You're holding this
18:50so you won't fall?
18:52Yes.
18:54If I don't hold it,
18:56I'll fall.
18:58Because if you don't hold it,
19:00you'll fall.
19:02Even though she's just
19:04one affected,
19:06it's still hard
19:08to balance.
19:11And Gilbert's blood pressure.
19:19It's a problem.
19:21She can't breathe.
19:23She falls.
19:25So what do you do?
19:27I'll hold her.
19:29I'll hold her here.
19:31Don't move.
19:33Don't move.
19:35Because if there's no one
19:37behind her, she'll fall.
19:38She'll fall.
19:40Okay.
19:42I'll hold her here.
19:44Is that okay?
19:46Okay.
19:48Once a month,
19:50Elsa visits him.
19:52He's the only one
19:54who's worried about her.
19:57I'm giving her a bath
19:59so I can relax
20:01my head.
20:03At the age of 60,
20:05Father Tortilliano's body
20:06was found.
20:11But he never
20:13left his daughter,
20:15Rey.
20:17He feeds her
20:19every day
20:21and takes care of her.
20:30Rey used to be a countess.
20:32But she's facing
20:34a new challenge.
20:36She can't walk
20:38and she can't sit.
20:41She loves to dance.
20:43She's a dancer.
20:45After that, she's a Miss Gay.
20:52Reynerio!
20:54How are you?
20:56Are you okay?
20:58Do you know me?
21:01Oh, you know me?
21:02Do you know me?
21:04I'm your idol.
21:07I'm your idol?
21:09Why am I your idol?
21:11Huh?
21:12I'm your idol?
21:13Are you watching?
21:15Rey was only 28 years old
21:17when she had dystonia.
21:19Oh, that's why.
21:22They weren't surprised
21:24because some of her family
21:26had the same illness.
21:28Her uncles told her stories.
21:30Her grandfather had dystonia.
21:32Her uncle had dystonia.
21:34Her four grandfathers
21:36had dystonia.
21:39Aside from being a countess,
21:41Rey also loves to walk
21:43and ride a bicycle.
21:48Now,
21:50this small room
21:52is her world.
21:55And thanks to her cell phone,
21:57she can be free
21:58for a short time.
22:00That's what she thinks.
22:03Let's have some medicine.
22:08What do you mean, thank you?
22:11We went there to thank you.
22:13You're a good boy.
22:15You're a good boy.
22:17You're praying.
22:19Oh, you're praying.
22:21What are you praying for?
22:25I might recover.
22:26You might recover?
22:28Yes, I might recover.
22:30Don't cry, don't cry,
22:32don't cry, don't cry,
22:34don't cry.
22:38Don't cry, don't cry,
22:40don't cry.
22:42I don't know how to express
22:44how she feels.
22:47But sometimes,
22:49more than medicine,
22:51attention and love
22:53are what they need.
22:54We're just happy to talk to each other.
22:56And I know that
22:58we can all be friends.
23:02We're friends now.
23:04We're friends on Facebook.
23:06Even though their bodies are weak,
23:12they are full of hope
23:14and will pursue their dreams.
23:19There's still hope
23:21to find medicine.
23:23To cure dystonia.
23:31In the 1960s,
23:33dystonia was first discovered
23:35in Capiz,
23:37on the island of Panay.
23:40Because of this disease,
23:42most people with dystonia
23:44are from Panay.
23:49But because families
23:50with dystonia
23:52didn't start looking
23:54for medicine for this disease,
23:57Sunshine Care Foundation
23:59came to the rescue.
24:01Families with dystonia
24:03had hope.
24:05They went to the doctor
24:07and gave blood samples.
24:10This is now being studied
24:12by scientists
24:14at the Collaborative Center
24:16for XDP
24:18for the study of
24:20how to cure this disease
24:22and find medicine for dystonia.
24:25It is the world's top scientists
24:27in movement disorder
24:29who are helping us there.
24:31So through that,
24:33we were able to find the gene.
24:35We discovered the gene
24:37that is affected
24:39and what the gene does.
24:41Like any disease,
24:43the process of finding the cure
24:45is long.
24:47What's important is
24:48that there is light
24:50and hope.
24:52What this community has given me
24:54is a superpower of compassion
24:56and a desire to help solve this.
24:58We will solve it, Cara.
25:00I'm telling you.
25:02We are getting there
25:04and it will be done
25:06and we will solve this.
25:08And it will be amazing
25:10what we contribute to science,
25:12to Parkinson's in general
25:14and to the world.
25:15This is how she takes care
25:17of her patients.
25:19At home,
25:21her siblings take care of her.
25:26I don't know
25:28where she gets her strength
25:30and sometimes,
25:32I don't see her crying.
25:35I don't want them to see
25:37that I'm weak, ma'am.
25:39I want them to see
25:41what they see in me.
25:42That's it.
25:48The last time I cried
25:50was with my sibling.
26:00It's okay.
26:08You know,
26:09crying is not a weakness.
26:18You need to let it out.
26:21It doesn't mean
26:23that you're crying because you're weak.
26:29I just realized
26:31that this story
26:33is not just a story
26:35of pain and sacrifice.
26:37He's so handsome.
26:44More than pain,
26:46this is a story of pain
26:48and more than money
26:50and medicine,
26:52what they need
26:54is hope.
26:56If you get sick,
26:58what's the first thing
27:00you'll do?
27:02What I'll do?
27:04I'll go scuba diving.
27:06You'll go scuba diving?
27:08Yes.
27:10Do you want to see the sea?
27:12Yes.
27:14Do you want to swim in the sea?
27:16Yes, that's my dream.
27:18Are you happy in the sea?
27:20Yes.
27:22We should go to the sea.
27:27I'll go with my son
27:29when it gets cold.
27:33I'll go with my son
27:35when it gets cold.
27:37I'll go with my son
27:39when it gets cold.
27:41I'll go with my son
27:43when it gets cold.
27:55On our last day in Capiz,
27:58we brought Artemio to the sea.
28:03It was hard for him to walk,
28:06but for a moment,
28:08the excitement in his face
28:10seemed to come back.
28:12Let's sit here.
28:17His body was weak,
28:19but because of Elsa's pain,
28:22his hope came back to life.
28:25If you keep coming back,
28:27If you keep coming back,
28:29I'll go to you.
28:31You'll go to me,
28:33and we'll go to the beach.
28:35We'll go to the beach.
28:37We'll take a bath on the beach.
28:39We'll swim.
28:41We'll swim.
28:43We'll look at fish.
28:45I don't have any fish.
28:47We'll swim and we'll see a lot of fish.
28:50I hope you'll get better
28:52when we pray.
29:00There's no guarantee
29:01when our problems will end,
29:05but we can hold on to hope.
29:10No one can cure all diseases,
29:14but we can hold on to pain.
29:18You can't do anything
29:20if you're alone,
29:23so let's hold on
29:25to each other.
29:29I'm Kara David,
29:31and this is Eyewitness.