Aired (February 19, 2024): Dahil sa kanyang autoimmune disease na ‘scleroderma,’ nakararanas ng paninigas ng balat ang 28-anyos na si Coleen. Minsan mang pinanghinaan ng loob, ngayo’y ginagamit na ni Coleen ang social media upang maunawaan ng ibang tao ang kanyang kondisyon. Panoorin ang video.
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00:00 Oh, Kuya Kim, you said, "If you have it, plump it."
00:04 If I have to carry your aura, why not?
00:09 Confidence is the key.
00:11 And you should be confident.
00:13 Others will say, "You're not doing anything wrong."
00:16 That's the story of Jamie Santos.
00:19 Makeup check.
00:23 OOTD check.
00:24 He's a fashionista and his aura is noticeable.
00:29 But don't judge his physical appearance.
00:33 Because Colin has a condition called scleroderma,
00:36 an autoimmune disease that causes skin hardening.
00:40 At 12 years old, Colin was diagnosed with cancer at 5 years old.
00:52 Even though Colin was sometimes neglected,
00:54 he chose to introduce his new look and feelings to others.
01:00 Hi, everyone. It's Colin.
01:03 Colin is 28 years old and has an animoy online journal
01:06 and his social media feed.
01:08 He uses it to help others understand his condition.
01:13 When I'm done with my skin,
01:17 it gets puffy and leaves a white mark.
01:20 My hands start to hurt.
01:23 My fingers start to deteriorate.
01:28 I wasn't taking it seriously at the time.
01:31 But around college, I started taking it seriously.
01:36 But because of his medication and continuous exercise,
01:40 Colin's skin got worse.
01:43 Can you imagine?
01:44 At 12 years old, you'll be told that you have a life expectancy.
01:48 In 5 years, I'll be dead.
01:51 I was 17 years old. I was still in college.
01:55 That's what I thought at that age.
01:59 More than a decade has passed,
02:01 but Colin's skin still hasn't healed.
02:04 You should know that scleroderma is a rare disease.
02:08 Dr. Aileen Agbanlog Dimatula, a rheumatologist,
02:13 explained that scleroderma can be obtained from a genetic and viral source.
02:17 Scleroderma is derived from the word "sclero,"
02:21 which means "hardening."
02:23 And derma means "skin,"
02:25 which means our skin is hardening.
02:28 Based on a lot of studies,
02:30 it can be obtained from a patient with a genetic predisposition
02:34 and sometimes from environmental triggers,
02:37 like viruses.
02:39 But Colin's fate is a joke.
02:42 I really regret that I drank a lot of alcohol
02:46 because it damaged my immune system.
02:51 It made it hard for my body to fight off scleroderma.
02:55 That was the hardest part in my life
02:59 because I was bedridden for a week,
03:01 which was never going to experience.
03:04 I often died.
03:05 At one point, I rushed to the ER.
03:07 I thought I was going to die.
03:10 And that night, I realized
03:14 that my body wasn't the same as before.
03:18 I'm not the same old strong Colin.
03:22 Colin's passion for online content was one of his strengths.
03:26 I just enjoy creating drawings.
03:31 Another way for me to accept myself is through makeup.
03:36 The third way I did to celebrate my acceptance was
03:41 to dress up more.
03:42 When I dress up, my day looks better.
03:46 Dr. Ainin added that it's important to know
03:51 if a person has scleroderma.
03:53 Scleroderma is a rare condition, an autoimmune disease.
03:57 According to the US data,
04:01 it affects 70 to 100 patients per one million population.
04:06 It's that rare.
04:07 It needs to be diagnosed immediately
04:09 to a patient with scleroderma
04:12 to prevent complications related to this condition.
04:15 Colin seems to have accepted his condition.
04:19 And this is also what he's working on
04:22 to better understand the condition.
04:24 That's why I started making content
04:27 to make the diagnosis for younger people less scary.
04:31 Now, I'm raising awareness in a fun, light-hearted way.
04:36 Until now, there's no clear cure for Colin's disease.
04:40 That's why Colin is constantly working on his body.
04:44 When I was at my lowest,
04:49 I genuinely felt that praying helped me so much.
04:53 Especially when I was bedridden.
04:57 I couldn't let myself go.
05:00 Even if I still don't have any symptoms,
05:03 please exercise, please take care of your body.
05:06 Life is meant to be enjoyed.
05:10 I am Jamie Santos, and that is the story you need to know.
05:15 (upbeat music)
05:17 (upbeat music)
05:20 (upbeat music)
05:24 (upbeat music)
05:26 (upbeat music)
05:29 (upbeat music)
05:31 (upbeat music)
05:34 [Music]
05:37 [BLANK_AUDIO]