This is a very personal blog post about my own experience dealing with a rare disease in a loved one. As I’ve mentioned on a recent facebook post, twelve years ago, my then 15 year old daughter was diagnosed with scleroderma. I could only blink when the specialist delivered the news as I’d never heard the word before. I had to ask her to repeat it and write it out for me.
At the time, we had no idea what type of scleroderma my daughter would develop, only that it was very unusual for someone her age to have it. Though it’s more common for women to develop scleroderma, onset usually falls between the ages of 35 and 50.
If you’ve been following me for a while, you’ll know that I rarely post about this struggle, only on occasion, and I feel the nudge to do it again now. I want to respect my daughter’s privacy, so I’m going to try to express how this has impacted me, because as I’ve told her many times, “This isn’t just happening to you. It’s happening to me. It’s happening to all of us who love you.”
Anyone who’s watched a child suffer, (adult or not), and can do nothing to stop it, knows that particular heartache of helplessness. I also want to state that I know that there are many people who have it worse—a child who is sicker, or who has died. There is always someone who has it worse. If this is you, know that my heart goes out to you and I pray comfort and hope will come your way.
So, what is Scleroderma exactly?
In a nutshell, Scleroderma results from an overproduction and accumulation of collagen in body tissues. Collagen is a fibrous type of protein that makes up your body's connective tissues, including your skin.(https://www.mayoclinic.org/diseases-conditions/scleroderma/symptoms-causes/syc-20351952)
Anyone can get it. It’s not contagious. It’s not curable. But there are treatments that help hold back the rate of progression and make the symptoms easier to live with. I’m thankful for modern medicine.
If not for modern medicine, my daughter would be in far worse condition.
Let me shout this out: I’M SO THANKFUL FOR MODERN MEDICINE.
What has been so hard for me as a mother?
It’s hard to watch my ballerina, my beautiful dancer, lose her ability to dance. It’s hard to see her joints stiffen, and her knuckles, elbows and fingertip become covered in painful ulcers. It breaks my heart that she can’t hike with her friends because she only has 50% lung capacity, or that she has to sleep so much.
It’s hard for me to see all the medication she has to take every day. Serious meds. And that she has to have chemical infusions twice a year, two sessions two weeks apart for five hours at a time.
It’s hard for me to see her life’s potential taken from her, to see how she’s missing out on a “normal” life. She’s very intelligent, very talented, witty, and loving, and I want her to have every advantage and opportunity, like any parent does.
It’s hard for me because she’s an adult and she desires autonomy, and doesn’t want to necessarily share her physical or emotional struggles with me. She’s capable of driving five hours to a hospital in Vancouver to have a day procedure where they insert a catheter into her heart to test for pulmonary hypertension, without my help. I have to respect her space, but to me, she’s still my little girl and I want to do all the HARD things for her.
HOWEVER, it’s not all hard. My daughter has a beautiful SOUL, so much more important than a body that’s not functioning properly, and also everlasting. She’s got such a sweet and positive attitude, and quietly takes her punches. Other people, unless they look very closely, would never guess she’s fighting this battle daily. She has a science degree and is attending art school. She works in an optometrist office. She has many friends who love her, not to mention a family who adores her. She has a good sense of humor, which as they say, “doth good like a medicine.” I'm so incredibly proud of her.
There really is much to look forward to.
Because of modern medicine and the prayers of those who believe in the power of prayer.
I believe in both.
Which is why I’m vaccinated. I’m vaccinated, not only to protect myself, but to protect my daughter. I’m double vaccinated and if I need a booster, I’ll get that too. Every year, if necessary.
I know people have vaccination hesitation for different reasons, but my appeal is that you would consider people like my daughter, who would have a very difficult time beating covid if they got it. Do it for yourself and do it for them.
Love Thy Neighbor. Get Vaccinated.
And if you can, please donate for scleroderma research. Every little bit helps.
https://www.facebook.com/donate/369406748030559/369406751363892/
Whew. Next time I’ll go back to posting about light and happy things like our first RV trip adventures, and of course, book news!
Scleroderma is an autoimmune disease. All the females on my mother’s side of the family had, or have, some sort of autoimmune disorder. My aunt had Raynaud’s and Scleroderma. My daughter is 23 and was diagnosed with Raynaud’s when she was 18. My mother has Addison’s Disease (where your body produces no adrenaline), but it’s her diagnosis of Pulmonary Fibrosis that will kill her. It’s autoimmune related, of course, and patients have 2-5 years to live. My heart goes out to you. I don’t care what happens to me, but watching loved ones struggle is the most painful thing of all.
Around five years ago one of my daughter’s doctors thought she might have scleroderma. It turned out that she had Mast Cell Activation Syndrome. I’ve walked a mile in your moccasins. (((Hugs)))
Miracles happen! My friends 19 y/o son had multiple tumors from germ cell cancer. After some tough chemo looked like he would need big time surgery. The last cat scan before surgery showed all the tumors were completely gone. A year later he hiked the Appalachian Trail from Maine to Georgia. Wonders to behold. Keep believing.
Thank you for sharing your painful thoughts as a mother. I also appreciate the information about scleroderma. My prayers are with you and your family.
I am thankful for your sharing about your family’s struggle with this condition. It is not easy to do but may be so helpful for another. I have a daughter with really serious Crohn’s disease. The damage is immense and a daily struggle also. There are visible scars from steroid use and the scars she carries inside from losing her adolescent years to hospitalization and surgery. But we have learned the power of prayer also and keep relying on a big God to see us through. She was able to have a child which was miraculous and we celebrate those moments. Your family has touched me in so many ways with your writing and music and now your story. You will continue to be in my prayers. And thankful for modern medicine too. And vaccines!
Bless you and your daughter both! And thank you for encouraging people to get vaccinated. Like you, I’ve had both shots and will happily get a booster if needed. I wish everyone would!
Prayers for your daughter’s continued determination to carry through.
prayers for you and your family
So sad to hear what your beautiful girl is going through, can’t imagine the pain and trauma and discomfort, but she is lucky to have a strong loving family around her. Will keep her in my prayers and hope that someday there will be a medical breakthrough for her. God protect and look after her and you. Be strong. Warm regards Anna from Australia.
I can’t have the vaccine because I nearly died having 1/53 of the flu vaccine some years ago. Those of you who can, please do, for those of us who can’t. It is not a lifestyle ‘choice’ for our family. Everyone around me gets vaccinated to help keep me alive.
Brava!
I have limited scleroderma, which is like scleroderma lite. It affects hands, feet, face, lungs and heart. It is a very scary disease and I am sorry you and your daughter have to face this. I know how terrified I am every time I have any kind of breathing difficulty. It causes me to panic and think my lungs are succumbing. A very real possibility. I am glad you have faith and hope your daughter does as well. I don’t know how I would handle this and my many other conditions if it weren’t for my faith. And yes, for those of us with various diseases, it is extremely important that people around us are vaccinated. Thank you so much for sharing.
I admire your tenacity and your daughter’s! Keep fighting. It is a tough disease, as any nurse or patient with the issue knows. Praying for safety now more than ever!
Thank you for sharing.
Your daughter sounds lovely.
I have RA as does my husband. Not always easy to manage or watch but we would rather have it than watch our son or daughter struggle with it as you have to do.
Thank you for sharing. I had never heard of this disease but will definitely put you and your daughter on my prayer list. I too am thankful for modern medicine. It is what is keeping my husband alive with his heart issues. We too have been vaccinated but live in an area where many refuse saying it’s all a political hoax. I don’t believe for one second that it’s a hoax but would take the vaccine to protect others, especially my grandson who is too young to get it!
I’m so sorry your family has to deal with this. I have never heard of this affliction. You have my sympathy and admiration for the way you and your family are handling it. I hope and pray that the holdouts will understand the importance of receiving the vaccine. Especially now with another virus on the horizon. I think it’s very brave but necessary of you to share such a personal concern to educate others about this disease. Thank you and God bless.
’s to you and yours. And yes please everyone get vaccinated. Don’t be selfish. Think of the other person walking down the street or standing next to you in line. They may have a family member who can’t afford to get COVID. Take care. Stay safe and be well.
So sorry your family is going through this. I’ll be praying for all of you.
I understand your pain. My daughter has EDS which is the opposite of what your daughter is going through. Her muscles lose their collagen and then don’t hold her bones and joints together. Her thumbs have become disjointed and only her skin was holding them on. It has also affected her lungs and heart. Most people with this disease won’t live past 46, she is now 41. She too, has a beautiful spirit and is kind and funny even in the midst of her constant pain. I pray for you and your precious daughter.
I had never heard of this disease nor seen its manifestation, so I can not begin to imagine living with its effects. Your daughter is a very courageous woman. She forged a path and career despite her limitations. You must be very proud of her achievements. When we come alongside a loved one who is suffering, we experience a plethora of emotions ourselves. God bless you both. I feel sure you are a wonderful support and comfort for your daughter. When appropriate, please let her know people outside her circle will remember her in prayer along with the rest of her family.
I am so very sorry that your daughter is going through this. But I’m so happy that she has people who love her who will be there for her always and who will watch out for her. And I’d like to add my plea…please, everyone, get vaccinated if you’re not already. I, too, will get any and all boosters if they become necessary. This is the least we can all do for the people we love.
Thank you for sharing your story. Your daughter sounds as wonderful as her mother. If I ever heard a case for vaccination, this is one for sure. I am also double vaccinated and like you would get a booster if need be.
Love and hugs to you!
Thank you for sharing this. You will help others understand a baffling disease
Thank you for sharing! Your daughter, you and your family are strong.
My family was vaccinated.
Hugs to you and prayers for our entire world as we live with the threat of COVID in our environment everyday.