The Rare Ruby (Living with FOP) - Invidious

The Rare Ruby (Living with FOP)

I'm living with Fibrodysplasia Ossificans Progressiva —
a condition so rare, most doctors have never heard of it.
FOP slowly turns soft tissue into bone.
There is no cure. There is no pause button.
But there is this.

The Rare Ruby is where I tell the truth about what it's
actually like — the invisible battles, the quiet strength,
the things nobody shows you about living in a body
that has other plans.

Through storytelling, poetry, and honest reflection,
I share what it means to live fully inside a life
that was never supposed to be easy.

If you've ever felt unseen, misunderstood, or like your
story was too rare to matter —
this channel is for you.

New videos every week.
Subscribe and walk this journey with me.

#TheRareRuby #FOPAwareness #FibrodysplasiaOssificansProgressiva
#RareDiseaseAwareness #NigerianStoryteller #InvisibleIllness
#RareDisease #ChronicIllnessAwareness

View channel on YouTube

Switch Invidious Instance

Videos

newest

oldest

popular

9:07

7 Reminders for Anyone Who’s Been Too Hard on Themselves

The Rare Ruby (Living with FOP)

Shared 5 days ago

4 views

7:07

You Were Never Meant to Be Strong Every Single Day #EmotionalWellness #SelfCare

The Rare Ruby (Living with FOP)

Shared 1 week ago

1 view

7:17

The Truth About People You Only Learn Later. #ChooseYourself #PeaceOverApproval

The Rare Ruby (Living with FOP)

Shared 3 weeks ago

1 view

3:51

Why I Have to Say No So Often

The Rare Ruby (Living with FOP)

Shared 1 month ago

1 view

4:05

Stop Calling Me Inspiring. #ActionOverAdmiration #Motivation

The Rare Ruby (Living with FOP)

Shared 1 month ago

2 views

9:23

Strength Isn’t What They Told You.#softstrength

The Rare Ruby (Living with FOP)

Shared 1 month ago

0 views

9:49

Why I Finally Stopped Asking ‘Why Me?’. #LivingDifferently

The Rare Ruby (Living with FOP)

Shared 1 month ago

1 view

4:45

What if the people you judge… are just surviving something you never had to?. #InvisibleStruggles

The Rare Ruby (Living with FOP)

Shared 1 month ago

2 views

6:15

What if the problem was never you? #Accessibility #inclusivedesign #ableism

The Rare Ruby (Living with FOP)

Shared 1 month ago

1 view

5:49

Some of us weren’t behind. We were moving differently. #SoftLife #MovingDifferently

The Rare Ruby (Living with FOP)

Shared 1 month ago

0 views

4:45

“FOP Is Not My Whole Story — But It Shapes Every Chapter of My Life #fopawareness #foryou

The Rare Ruby (Living with FOP)

Shared 1 month ago

2 views

8:04

To the Version of Me That’s Still Coming. #futureself #identityandpurpose

The Rare Ruby (Living with FOP)

Shared 1 month ago

0 views

5:21

I Grew Up Never Seeing Anyone Like Me on Screen. This Is What That Does to You.#mediarepresentation

The Rare Ruby (Living with FOP)

Shared 3 months ago

0 views

5:15

What the People Who Love Someone With a Rare Disease Actually Need to Hear #disabilitysupport

The Rare Ruby (Living with FOP)

Shared 3 months ago

1 view

5:33

If I Could Tell My Younger Self One Thing #LetterToMyYoungerSelf #GentleStrength

The Rare Ruby (Living with FOP)

Shared 3 months ago

4 views

8:36

what I wish people understood about rare diseases#rarediseaseawareness #rarevoices

The Rare Ruby (Living with FOP)

Shared 3 months ago

0 views

5:40

Understanding FOP: What Everyone Should Know #fopawareness #raredisease

The Rare Ruby (Living with FOP)

Shared 4 months ago

0 views

5:26

The One Thing People Always Get Wrong When They Look at Me #disabilityawareness #fopawareness

The Rare Ruby (Living with FOP)

Shared 4 months ago

1 view

5:08

Nobody Is Going to Celebrate This Version of You. So Let's Do It Ourselves. #selflove# #softlife

The Rare Ruby (Living with FOP)

Shared 4 months ago

1 view

5:59

What you see vs What I feel #emotionalstorytelling #motivation

The Rare Ruby (Living with FOP)

Shared 4 months ago

3 views

6:41

How I Learned to Love a Life I Didn't Choose #selflove #healingjourney #nigerianstory

The Rare Ruby (Living with FOP)

Shared 5 months ago

5 views

6:49

💎 Transforming Pain into Art and Awareness | My FOP Story of Strength | A Rare Ruby Original

The Rare Ruby (Living with FOP)

Shared 5 months ago

3 views

5:49

One Thing Happened That Made Me See My Condition Completely Differently #fopawareness #quietmoment

The Rare Ruby (Living with FOP)

Shared 5 months ago

8 views

5:02

I Have the Rarest Condition in the World. Here's What Nobody Shows You. #fopawareness #nigerianstory

The Rare Ruby (Living with FOP)

Shared 5 months ago

8 views

5:10

My Body Is Slowly Turning to Bone. This Is What Living With It Actually Feels Like. #fop

The Rare Ruby (Living with FOP)

Shared 5 months ago

6 views

2:21

Doctors call it FOP, I call it My Rare Reality 💎🌹#fopawareness #motivationalshorts

The Rare Ruby (Living with FOP)

Shared 6 months ago

7 views