Life. This is the one life we get. We have to fight for it. Since birth really. Don’t give up. I have wanted to so many times. We can beat this. Enjoy life when you can. Laugh. Love. Dance and sing. Do it all!
It is hard to imagine this when you are fighting the beast every day, but someday you will have to remind yourself to stop and smell the coffee and not get so wrapped up in the rat race of life. Remember to thank your caregivers
Thank goodness, I have the best team of professionals handling every aspect of my GVHD. Tacrolimus, Photophores and lots of hope. I’m slowly getting stronger and healing the best I can.
I support gvhd awareness because I am a patient experiencing this disease and there are not enough doctors around who understand it and what it can do to a body. There is also no funding available, that I am aware of, to support
My daughter has been a GVHD patient with ongoing changing symptoms which are not easily diagnosed or treated. I hope, with awareness, some light will be shed on all those in need who are suffering with this little-recognized
Hello, in honor of my 22 year old son Kash, who had a BMT 2 years ago and is dealing with some GVHD, our family decided to sport our bracelets all week and we even managed to take a few pics in support of him and all of those
My mom has to travel every week to Boston, MA from Albany, NY (approx. 3 hours) to get Extracorporal photopheresis (ECP), which is a proven treatment for chronic GVHD and has been a tremendous help with my mom's symptoms. However
Both my brother and I suffered the consequences of lymphoma during the past seven years. We were both blessed with the positive outcome of medical treatments that eradicated the cancer. I had an autologous stem cell transplant and
At one point in my 31-year survival of multiple myeloma (which has a 5 year average survival), the oncologist told me nothing was left, I should go to a hospice. I refused, instead electing for an allo transplant. The allo and an
We all have a different journey and the journey is constantly changing with GVHD. With GVHD, sometimes it is here for the long haul while other times GVHD makes a strong, short appearance. Either way, just take it one day at a
After running a group for transplant survivors who had moderate to severe GVHD, i support this day 100%. A brave, resilient group of people, who deal with daily stress with grace and forward thinking.
I support gvhd awareness because I am a patient experiencing this disease and there are not enough doctors around who understand it and what it can do to a body. There is also no funding available, that I am aware of, to support
Hello! I have experienced GVHD and offer my support to others who are traveling this path. Although I was forewarned before my transplant that there was a good chance that I would experience GVHD, I was mostly focused on trying to
Hi. My name is Diane. And I just wanted to tell anybody that’s reading this that I am a friend of somebody that has GVHD. He recently had a bone marrow transplant a few months ago. They were very much aware of all the
My sweetheart has had GVHD for 5-6 years after a stem cell transplant. He has been on trials from Dana-Farber in Boston to NIH. His full time job is to beat it. He continues to ride his bike, walk and stay positive. He is a
My husband is in thankfully two years in remission from acute lymphoblastic leukemia due to a life-saving stem cell transplant. Our family is grateful for this time with him, but GVHD of the lungs and joints has left him quite
I have been an oncology social worker for over 25 years. I wear this bracelet in honor of all those I have met suffering with this disease. I wear it to raise awareness for proper treatment and funding for new research to battle
I live with the challenges of GVHD after a bone marrow transplant in 2018. At times it can actually feel worse than my initial diagnosis of AML. I have a wonderful team of doctors thru the University of Michigan. They are very
My husband and I agreed that we needed to keep laughing whenever we could! We often had to work to find food that was palatable since GvHD made a mess of my entire GI tract. This was a silly celebration of a meal that worked! Our
Hello! I was reading your stories and have my own to share which I hope will inspire others. Even though I had a rough road after transplant and became disabled by lung GVHD, I found the power of art and humor for healing along
I want those who are suffering with GVHD to have HOPE. I am 5+ years post transplant and during year one I had skin GVHD a couple of times. Although more mild than organ or eye GVHD or some others, it was really painful and I
I was first diagnosed with MDS about 4 years ago and went through a donor stem cell transplant. It was a rough year-and-a-half living in a virtual bubble, with constant blood transfusions, profound weakness, hair loss, temporary
Progress for GVHD is so painstakingly slow. Even more frustrating is that the medical community does such a poor job of preparing transplant patients for cGVHD. This is especially true for vaginal GVHD. Women continue to suffer
My daughter has been a GVHD patient with ongoing changing symptoms which are not easily diagnosed or treated. I hope, with awareness, some light will be shed on all those in need who are suffering with this little-recognized
I support GVHD patients because I struggled with GVHD for 3 years after my transplant. It wasn't easy but I got through it and I encourage anyone with GVH to just keep moving forward.
From a 15-year stem cell transplant survivor, we all go through our own trials with GVHD, unfortunately some worse than others! But together we can get through anything! Keep smiling! You are stronger than you know! God bless each
Don’t give up! Everyone responds differently to treatments. Work with your doctor to try different things that work for you. Now (fall 2022) down to Jakafi .5 every other day
So Ironic that February 17th is the 1st ever GVHD Awareness Day. It will be my son, Dylan's 31st birthday. Diagnosed at age 9 with osteosarcoma enduring the loss of his leg. Three years later with myelodysplasia. Stem cell
Even though my beautiful wife lost her battle with GVHD I will always support the cause. I pray that someday there will be a way to stop this disease that gets in the way of a life saving treatment. For you that are fighting this
Keep in mind that a little (or a lot of) GVHD may mean the donor cells will be attacking any residual cancer cells you may have, and you may have a lesser risk of the cancer returning. I hope that gives you some comfort.
I have been dealing with GVHD for 5+yrs and at times it has it’s challenges, but I continue to stay active as possible, I try to stay as positive as possible and continue to live as normal a life as possible. Stay Strong
I have had GVHD since my bone marrow transplant September 2012. I am 10 years old with my new chance of being on earth, 55 in all. I feel accountable for this time, which could be a negative thing, since I am less focused and