Keeping it in the Family
The first time I truly had “that” feeling of something being not right with my body happened about a month prior to my wedding at age 21. I was shopping at our local mall and, what I now know are palpitations, hit me. I was completely freaked out. I had also lost weight without trying and I was just so tired. I went to my physician who promptly dismissed me as being a nervous bride.
Through the years, I had many symptoms that would wax and wane. Everything from GI symptoms, weird skin rashes, weight loss, asthma & allergies, gyn problems to extreme fatigue, palpitations, joint pain and dental issues. Of course, none of my crazy symptoms would be flaring when I needed a doctor to see it.
This pattern continued for years. During this time, I gave birth to 2 children, suffered 2 devastating miscarriages and finally gave birth to my youngest child. After the miscarriages, my labs showed something autoimmune going on and I was diagnosed with antiphospholipid antibodies. I was referred to a rheumatologist who was hesitant to diagnose me with SLE because I didn’t have all the markers needed. Fourteen super crazy and long years later, and after becoming very, very sick, I had all the markers present to be formally diagnosed with SLE. Treatment was started and within a few years it appeared that I was in a remission.
All of us in the autoimmune world know that any kind of stress can (and in most cases, will) trigger a flare. Stress was a most unwelcomed guest in my life for a few years. During this time, I became a parent of a chronically ill child with a very serious disorder. This of course triggered a flare of monumental proportions. I thought I had it all together and was able to manage the stress. I couldn’t have been more wrong. I developed new symptoms that completely stopped me in my tracks. Migraines, muscular pains, tachycardia, paleness, syncope, etc. I noticed that these new symptoms were consistent with symptoms that my younger child (and middle child).
My younger child had been diagnosed with dysautonomia, a dysfunction of the autonomic nervous system. He was a severe case. Our family decided to form a nonprofit foundation for dysautonomia research once we learned that his doctors in Houston were studying this disorder. Since forming the Lamb Foundation for
Dysautonomia Research, my middle child and I were both diagnosed with this disorder. For more information on dysautonomia and our foundation, please see www.dysautonomiaresearch.org. Dysautonomia can have many triggers. Since studies have already shown that autoimmune issues run in families, our doctors and researchers decided to study the role of dysautonomia in families. Sure enough, it appears that dysautonomia can run in families and can also have an autoimmune component. It’s our family’s hope that diagnosis times for autoimmune diseases and dysautonomia are shortened (by years!). Once a treatment plan is started, the patients’ quality of life can be improved until that day that we have a cure! We are desperately trying to raise funds for all our autoimmune researchers. Please join us in our quest for a cure. www.dysautonomiaresearch.org.