Log In or Register to Join The Conversation!
Viewing 6 reply threads
  • Author
    Posts
    • #23481
      Brittany Foster
      Keymaster

      Today, I am wearing one of my favorite shirts. I happened to find it in my pajama drawer the other day and put it on for some appointments that I had. I received a lot of compliments on it and it reminded me that wearing something can spark a conversation and even help build connections with others.

      The shirt that I am wearing is one that I had made for a congenital heart disease walk. On the front of it it has a red heart with an EKG beat in the middle of it and the top in big letters says “Keep Tickin” . This is something that my pacemaker doctor once said to me and it stuck with me. The back says “Team Brittany”.

      The shirt helps to make conversations less awkward about chronic illness. In the waiting room someone noticed the shirt and said “What does your shirt say?”. Just a simple dialogue like this can bring awareness!

      Do you own clothing that mentions your rare disease or do you have a “team shirt” to show support?

    • #23525
      V.R. Peterson
      Participant

      My son had awareness bracelets made just before he had his PTE surgery for his CTEPH. One side said, “Kick CTEPH’S butt” and the other side said, “Before you roar, take a deep breath”. Then he had another one made just for him that said “F*** CTEPH”. I still occasionally wear mine. He stopped wearing his when he busted CTEPH.

    • #23526
      Colleen Steele
      Keymaster

      @mamabear007 a friend of mine wanted to make a t-shirt for my son that read something similar about PH but I wasn’t sure when or if I would let him wear it…lol. He was just a kid at the time.

      Cullen has an I’m Aware That I’m Rare T-shirt that says, “Just Breathe” on the back of it. He wore it many times at the hospital and I took a few pictures of him in his hospital bed with it on. It’s made for some good awareness posts over the years.

    • #23528
      V.R. Peterson
      Participant

      @colleensteele, if I were honest, I probably would have to admit that I wouldn’t have allowed that bracelet if he were still a minor. However, since he was late 20’s I had to admit — at least to myself — that I’d be tempted to wear something very similar if I were the one with CTEPH, so I kept my mouth shut. Sometimes it’s difficult knowing he got at least part of his attitude from me.

    • #23529
      Margaret
      Participant

      I have 3 tees from my Ottawa (Canada) support group: one lists symptoms on the back; one was designed by a young girl for her sister (I think), with “pHriends” (or, maybe “pHighter – in laundry downstairs) on the back and flower-filled lungs on the front; and the third has “6 min Walk for Breath” on the back. They are all in must of my washes (only every third week as I hate to go down those stairs)

    • #23587
      Aubrey
      Participant

      I have a few items. I have PH shorts and t-shirt that were custom made (my cousin makes my PHriends and I custom PH items and makes clothing for 5ks that we do), earrings and necklace, leggings, 4 PH 5k shirts, PH tumbler, and socks. My boyfriend has shirts so does my mom and grandma. Sometimes we are all asked what PH is other times people just stare. My shirts say Right heart PHight, the ribbon with hundreds of names on it including mine, and then one shirt says The devil whispered in my ear you’re not strong enough to withstand the storm today I whispered in the devil’s ear I am the storm Pulmonary hypertension Warrior, one says PHight 4 A Cure with purple boxing gloves and my shorts say Pulmonary hypertension awareness has the ribbon with my name on it.

    • #23604
      Brittany Foster
      Keymaster

      @drgnfly I love that you have so many clothing items that help to raise awareness! I know that people sometimes just stare and they don’t say anything, but you never know who could be reading it any relating or just interested to see what it says. I like the one that you are talking about with the boxing gloves ! It certainly is a heck of a fight we are putting up ! We should be in the olympics by now. Chronic illness is an extreme sport!

Viewing 6 reply threads
  • You must be logged in to reply to this topic.
Copyright © 2017-2020 All rights reserved.

©2020 KLEO Template a premium and multipurpose theme from Seventh Queen

CONTACT US

We're not around right now. But you can send us an email and we'll get back to you, asap.

Sending
or

Log in with your credentials

or    

Forgot your details?

or

Create Account