Positive Mamas With Scleroderma
Motherhood is a unique, sacred journey that women from many different walks of life experience. Some women beat incredible odds to become pregnant. On the other hand, some have to accept the fact that they may never undergo this journey. Individuals with scleroderma are caught somewhere in the middle of these choices.
Generally, it may not seem like a viable option, but a portion women with scleroderma can conceive. There are a few factors that can prevent this from happening. The degree to which someone is ravaged from illness varies from one patient to another. High doses of chemotherapy, prescribed as a form of treatment, can cause early menopause or infertility. If a patient has little to no mobility, it could be hard for them to bend down or lift objects, as well as perform fine motor tasks. This makes it difficult to carry the weight of a child or take care of a newborn baby. Moderate systemic organ failure can be another way scleroderma roadblocks motherhood.
Women who have milder forms of scleroderma can become pregnant and deliver healthy babies. The mother’s outcome varies from one pregnancy to the next and are unpredictable. Depending on the severity of symptoms, they may be considered high risk. It is somewhat common to experience a decrease in symptoms while pregnant, mimicking a temporary form of remission.
Natalie has had systemic scleroderma for 16 years, with her lungs and hands being the most affected parts of her body. When she noticed her fingers contracting, she had surgery to straighten them out. Despite being diagnosed with a difficult disease, she believes in the power of thinking and speaking positive to harness the good things life has to offer.
She recently had her second child, at 40 years old, and her first at 30. Since she was over the age of 35 and with an autoimmune disease, she was considered a high risk pregnancy. Natalie took the time to answer some questions about motherhood:
How has scleroderma affected your pregnancies?
I felt great with both pregnancies and tried to do my best to stay as active as possible. Luckily, my disease doesn't affect me while I'm pregnant. The only thing that worsened significantly, after both my pregnancies, was telangiectasia.
What golden piece of advice would you give to other moms?
Give yourself grace and forgive yourself. As a mother, I struggle with mom guilt. My ten year old daughter has had to be more independent, growing up. She helps me by doing her own chores and other tasks, which is molding her into a compassionate human being. Once I realized my journey was affecting her in positive ways, it took some of the guilt away from me. Recently, she had picture day and I was feeling bad because I couldn’t braid her hair. But we figured out a way to braid it together, interchanging our hands, and it turned into a beautiful bonding experience.
When I take my 9 month old to music class, I might not be able to sit on the floor with him and the other moms, but I sit in a chair and that works just as well. The most rewarding thing about motherhood is watching your children grow up to be good people, as well as seeing them happy. When they’re happy to see you and hug you, that is the best feeling.
Do people doubt your abilities based off of your illness?
Yes. Recently, I went on a job interview for a nanny position and the woman asked me how I drove. She insisted on coming in the car with me and watched my every move, as I drove the car. There is a stigma for mom's in general that we have to be a certain degree of perfection, and society escalates these pressures. People underestimate what I'm capable of doing, even myself sometimes. I changed my son's diaper on my lap, in an airplane, which is a tough thing to do whether you're disabled or not. I surprise myself as to what I can do when I push myself to the limit. Don't give up on yourself and think positive.
Grace had her miracle baby after healing from a stem cell transplant:
"In 2011, I was diagnosed with scleroderma. I was 18 years old and scared. My case was mild but in 2015, my scleroderma got worse. I had my first digital ulcer and bad gastrointestinal and lung issues. I had heard of the stem cell transplant, as a form of treatment. That year I was approved and went through the transplant summer 2015. After my recovery, my scleroderma greatly improved and I had minimal issues.
Before the transplant, I was told that it could affect my ability to have children. I was afraid that I couldn’t conceive. My catholic faith helped me through it all and I prayed heavily for a child.
After I got married in 2017, it took us 6 months to conceive. My prayers were answered. The pregnancy was easy and the birth was smooth; healthy baby and normal recovery. Even though I still have scleroderma, the transplant has stopped the progression of this horrible disease.
Now that I am a mother, I am blessed to be able to have the gift of children. Some people can’t have children and I thank God every day for my gift of my baby girl, Ava. Motherhood and scleroderma is challenging but it is beautiful and fulfilling. I still have to deal with Raynaud's and fatigue. I have balanced a way to understand my body's signals, as well as take care of my daughter's needs. It is a juggling act, but I know I am strong. Ultimately, even though it’s tough at times, I know my suffering was for a purpose."
These mothers, and so many others around the world, only want what's best for their children. Dealing with the symptoms of an illness, on top of being a mom, is an incredible feat. Disease or not, motherhood is rewarding, challenging, and unique for every individual and obstacles are expected on any journey. Plan ahead, rest when you need, but most importantly start every single day with your best foot forward,
Note: The Sclero Connect is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment This content is not intended to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.