Helping girls and young women manage autoimmune disease in childhood is an ongoing journey for mothers and daughters.
By Cathy Patty-Resk, CPNP
If you’re the mother of a daughter, you have felt the intensity of the bond that unites parent and child in this unique relationship. You have been tireless in your efforts to keep her healthy and safe. You have cherished all the shared moments that reflect your connection. You look forward to sharing adventures and journeys throughout your lives together.
If you’re a mother living with autoimmune disease, the day you discover you will also be sharing the experience of managing that reality with your daughter is going to be a difficult day. This is a journey you hoped you would never share. And yet, despite the emotional and physical challenges of sharing an autoimmune diagnosis with your daughter, there is a bright side: You, as a well-informed mother, can be instrumental in leading your daughter toward a path of wellness and physical well-being. You may even find that your daughter is a source of strength for you, as you will be for her.
A Family Connection: Understanding Autoimmune Disease in Children
There are more than 80 autoimmune diseases, and autoimmune disease is one of the top 10 leading causes of death in female children and in all women up to 64 years of age. Some autoimmune diseases seem to be genetically linked and tend to be more common in some families.
We know that children of parents who have hidradenitis suppurativa, multiple sclerosis, or systemic lupus erythematous are at much higher risk of developing these same autoimmune diseases during childhood. Rheumatologists have also shown, however, that children of parents with any autoimmune disease are more likely to be diagnosed with an autoimmune disorder of some type during childhood, a risk that will continue into adulthood. Many times these children are affected by more than one autoimmune disease during childhood.
The more common autoimmune diseases of childhood are diabetes, sarcoidosis, scleroderma, psoriasis, Crohn’s disease, juvenile arthritis, Sjogren’s syndrome, uveitis/ inflammation of the eyes, myositis/ inflammation of muscles, vasculitis/ inflammation of blood vessel walls, and Hashimoto’s thyroiditis/inflammation of the thyroid gland. These diseases can occur at any age during childhood. Some may present during infancy or early childhood, whereas others present in the teen years, with girls affected more often than boys.
Childhood autoimmune diseases can have many signs and symptoms or only a few. Some could be distinct, common, or overlapping particular autoimmune diseases. Children often experience different symptoms and risks associated with autoimmune disease than adults with the same disease. For example, children with lupus are at much higher risk of serious kidney disease than are adults with the disease. Children are also at higher risk of going blind from uveitis (inflammation in the eye) than adults with that condition.
The most typical symptoms children experience include fever; fatigue; rash; headaches; morning stiffness; joint pain, swelling, or warmth; nausea and vomiting; diarrhea or constipation; eye pain, lack of tears, blurred vision, and unexplainable eye redness; swollen lymph nodes in the neck or armpits; dry mouth; sores in the nose or mouth; an excessive number of cavities (despite good dental hygiene); hair loss or bald spots; and decreased appetite. Symptoms that interrupt sleep or that interfere with play, social activities, or school attendance are significant. Being able to identify the signs of autoimmune disease in childhood is the first step mothers can take to help their daughters navigate an autoimmune disease.
Getting Good Care for Children with Autoimmune Disease
Early diagnosis and treatment can mean the difference between excessive suffering and a good quality of life—and, in fact, the difference between life and death.
If your daughter has signs and symptoms that you think may be related to an autoimmune disorder, the first step is to discuss it with her pediatrician, who will be able to refer her to a pediatric rheumatologist.
A pediatric rheumatologist will listen to your concerns, examine your daughter, order labs or other studies to help arrive at a diagnosis, and make appropriate recommendations. They may send you to a different type of specialist who may be able to better diagnose and treat your daughter.
As you seek care, don’t hesitate to request a second opinion; be an advocate for your child’s health and well-being. It’s important that you keep asking medical providers questions so that you can best understand what they are telling you—and your providers want you to understand. Don’t forget to breathe deeply and devote time to self-care; this process is a journey, and you will need to maintain your own well-being as well as your daughter’s.
Your Disease Is Not Her Disease
Many times we hear a mother say that her daughter is her “Mini-Me.” While that may be the case if you’re talking about hair, a penchant for chocolate, or a talent for singing, assuming that your daughter’s experience with autoimmune disease will mirror your own is not productive.
This is because, most likely, you were diagnosed with your autoimmune disease in adulthood, while your daughter has been diagnosed as a child, with her own unique needs and disease profile. There is no correlation between autoimmune disease severity in parents and their children. Also keep in mind that treatment has evolved significantly in recent years, and your daughter may have access to therapies that you are unaware of; perhaps she could benefit from a new medication that targets a very specific inflammatory protein that is making her sick or from a genetic test to assist with diagnosis or risk of complications. These medical advances are very likely something that improves your daughter’s quality of life tremendously by keeping her as healthy as possible.
For example, a new class of medications called biologics are dramatically changing how we manage autoimmune diseases; they are preventing serious disabilities and increasing survival rates. Children with arthritis used to become disabled from inflammatory proteins that destroy the lining of the joints and bones, causing multiple joint deformities, but biologics specifically target these damaging inflammatory proteins. Today it’s almost unheard of that children are disabled from this disease when they have access to pediatric rheumatology care. Daughters with childhood arthritis are dancing at their weddings and running after their own children.
There is nothing like a mother’s love when we are hurting physically or emotionally. Often an autoimmune disease diagnosis evokes both physical and emotional pain for the mother and daughter for very different reasons. To help your daughter manage a new diagnosis of an autoimmune disorder, it’s important to explore your own self-awareness and be mindful of your and your daughter’s feelings and attitudes about autoimmune disease.
A mother whose own battle with autoimmune disease started in adulthood has probably spent years asking herself things like Why me? Why can’t I just be well all the time? Why do I have to work so hard to stay well? Why does this medicine that is supposed to be helping me make me feel so awful sometimes? Why do I always have to be sick during special family occasions? What am I going to do if I am too sick to work and take care of my family? Why can’t I just be like every other mom?
There’s no doubt that these are tough questions—and completely appropriate for you as a mom; but be aware that your daughter will have her own, different questions— all valid—as a child living with this disease. Take care to acknowledge her questions and discuss her unique concerns, knowing that you won’t always be able to provide an answer or solve the problem. That’s okay. As she grows into adulthood, you will be able to offer your perspective on the issues she encounters that you too have experienced.
Walk the Walk So Your Daughter Knows the Way
As a mother it is natural to feel pain when we see our children suffer or anticipate suffering on their part, so acknowledge your own pain, too. Your daughter probably has your intuitive ability to sense stress, and she will absorb your negativity if that’s what you project. If you habitually say how much you hate going to the doctor or taking medicine, she will quickly learn that you will feel sorry for her if she complains, whines, or cries about it; whereas if you work to put a positive spin on aspects of her experience (“Wouldn’t it be cool if medicine for kids could taste more like eating a fruit roll-up? Maybe someday you can be a mad scientist and invent better medicines for kids!”), she will understand the benefits of a positive outlook.
As she learns the power of positivity, each of you will benefit from one another’s brighter view. You both will have good days and bad days— after all, you have an autoimmune disease—but know that she is consistently watching and learning from you, so walk the walk and lead your daughter down a positive path, with a fighting spirit whenever possible. This effort will certainly help her navigate the disease, and it will also teach her to think positively through challenges later in life.
At the end of the day, don’t forget the power of a hug. Your affection and your smile will reaffirm that special bond between mother and daughter.
Health Benefits of Positive Thinking
- Increased life span
- Lower rates of depression
- Lower levels of distress
- Greater resistance to the common cold
- Better psychological and physical well-being
- Reduced risk of death from cardiovascular disease
- Better coping skills during hardships and times of stress
Positive Thinking: Stop Negative Self-Talk to Reduce Stress. Mayo Clinic website. Available at: http://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/positive-thinking/art-20043950. Accessed October 12, 2016.
Cathy Patty-Resk, CPNP, is a board-certified pediatric nurse practitioner and pediatric at-large member and active member of the legislative advocacy team of the Rheumatology Nurses Society. She continuously seeks opportunities to bring awareness of the need for more pediatric pharmaceutical clinic trials and healthcare system barriers that negatively affect the health of children with autoimmune diseases. She has also served as the co-editor of and a contributor to the Core Curriculum for Rheumatology Nursing and has partnered with the American Nurses Credentialing Center to launch the certification by portfolio for rheumatology nurses. She has worked at the Children’s Hospital of Michigan, Detroit, since 2001. Cathy provides care for children with arthritis, vasculitis, lupus, juvenile dermatomyositis, psoriatic arthritis, and periodic fever syndromes, as well as other autoimmune inflammatory diseases. She has dedicated her career to caring for children in at-risk populations.
The Rheumatology Nurses Society is a professional organization committed to the development and education of nurses to benefit its members, as well as patients, families, and the community. To learn more visit rnsnurse.org.