Still Beautiful: Tina’s Journey Through a Rare and Ruthless Disease

What makes you a Beautiful Disaster?

Everything behind the logo. I feel like my life is a disaster due to my illness, but I still feel like I am beautiful.

Why do you identify with the Beautiful Disaster brand?

I love pink and black! The stories behind the brand mean so much to me.

My Beautiful Disaster Story

I am reaching out with the heaviest of hearts to share the truth about me and my health. Last year, I was diagnosed with a very rare and aggressive form of vasculitis called Takayasu’s Arteritis, also known as pulseless disease. It affects only 1 in 2,000,000 people. My health has deteriorated far beyond what my specialist team has ever seen, and the battle to save my life — and my quality of life — continues every day.

This disease causes the walls of major blood vessels to thicken and narrow. No one can confidently say how or why I ended up with this condition.

Takayasu’s caused my right carotid artery — and surrounding vessels — to completely block, cutting off blood flow to my brain. The left side is also severely narrowed. This led to multiple strokes, leaving irreparable brain damage in three different areas. There was a time when I could not walk, could not talk, and could not tell my boys I loved them.

But I overcame that.

After spending weeks in the hospital — several times — doctors tried everything to reduce the inflammation and prevent more strokes. When nothing worked, I was given the devastating news:
If treatment doesn’t take effect, the consequences will be catastrophic. My doctors estimate I have 2–6 years.

They put a stent in my neck and started me on a weekly injection called Actemra. I hate needles, but I forced myself — and I’ve been on it for six months. My doctor believes it may be the only reason I’m still alive.

Then my insurance stopped covering it.

My doctors have appealed again and again.

This disease is extremely painful, and some days, just getting up and getting dressed leaves me exhausted.

Surgery, Survival, and Starting Over

In March, I had surgery to open three arteries. I traveled to Stanford Hospital in California — where I’m originally from — even though I now live in Missouri. Traveling for treatment is expensive.

During surgery, I had 22 staples in my abdomen and another stent placed. I weighed just 62 pounds when I arrived. I woke up in the ICU with a breathing tube in my throat, grateful that God had given me another chance.

Unfortunately, my arteries are now past the point where stents can help. Because the disease is inflammatory, it creates “roadblocks” as fast as doctors can treat them. My only hope is that treatment works — that inflammation decreases enough to allow blood to reach my brain again.

Finding Beautiful Disaster

As I adjusted to this terrifying new way of life, I saw an ad for Beautiful Disaster. Pink and black — my favorite colors. Then I read the stories. I felt connected. Seen. Understood.

I ordered a sweatshirt.
I’m on disability, so most of my BD pieces come from Poshmark, but leggings and joggers are my go-to — I can’t wear jeans anymore.

This brand feels like me.
This community feels like home.

I hope one day my closet is full of BD clothes.

Thank you for supporting women like me. 💜

What helped me turn it around?

Every day, I wake up and thank God for giving me another day to live.

Three things I’ve done to move closer to happiness:

Pray, pray, and pray.

Favorite Beautiful Disaster collection:

I love both — some pieces capture how I feel today, and others reflect the mood I want to step into.