My Family History of Autoimmune Disease
My awareness of my family history of autoimmune disease is a recent development. I grew up in a small town very close to my grandparents, actively involved in their day to day lives, and very aware of their gradual health decline. I see so many symptoms that developed over their lives that were autoimmune diseases. The paternal side of my family blessed me with bunions and a possible propensity to cancer (genetic cancer screening is planned for this fall). My mother’s side has the family history of autoimmune disease which has now been connected to our genetics. I hope to add a graphic illustration at a later date. My grandparents were 1st or 2nd generation immigrants and marriage within the same cultural group was fairly common. Pay close attention. In my generation, two of my siblings married descendants from our great grandmother’s sibling. That is part of why I’ve decided to tackle this blog. I think our family would be awesome to study and I’m hoping that some of what I’m providing could be useful to someone somewhere with far more knowledge than I have.
Maternal Grandfather, Mom’s Dad
My grandad’s mom is related to my brother-in-law and sister-in-law’s grandmom. He is the source of the family history of autoimmune disease and I am hopeful that I will be able to connect it to the generation above him because of this double kinship. More on that will unfold. He had psoriasis on his legs and they looked awful by the time he died. He held his right arm against his chest and the upper right side of his body was basically immobile when he died. We thought he was immobile because of a serious electrocution accident, but now I believe it is because of a life with unmanaged Psoriatic Arthritis. My grandparents did not have much use for traditional doctors and only used them when forced to by their kids. They ate tons of garlic and used herbal remedies that are resurfacing today as remedies to manage the pain of this disease. For example, my grandfather drank goat milk because he found it easier to digest and thought it made him feel better. He milked his own goat and had a fresh glass daily.
Maternal Aunt 1
She received a diagnosis of Small Lymphocytic Lymphoma Cancer in her 70’s. So far I have not found a specific link between HLA-B27 and this specific cancer. It is fascinating to me though that there is a link between taking the immunosuppressive biologic drugs and an increased risk of lymphoma. So I’m hoping there will be unfolding connections regarding her cancer.
Maternal Aunt 2, Mom’s sister
As she went through menopause, she received a diagnosis of Multiple Sclerosis, which is generally diagnosed at a much younger age. She believes she may have had an early flare in college and once after the birth of one of her children but neither were identified as MS at the time. My aunt had spinal surgeries and takes medication for the MS and has gained some mobility in her late 60’s. She and I both had our disease activate when we went through menopause so I hope to find some research that connects menopause with the onset of autoimmune disease. She is also only about 15 years older than me so if there is an environmental trigger, we are more likely to have experienced similar environmental exposures.
Maternal Cousin, Son of Aunt 3
Her son was diagnosed with Nephrotic Syndrome kidney failure at age 4. She believes it was because of an unmanaged infection but never got a clear answer as to the cause. He had to replace his kidney in puberty and again as a young adult.
Maternal Uncle 1
He has been diagnosed with diverticulitis and recently suffered a serious heart attack.
Maternal Cousin, son of Uncle 1
His son was diagnosed with Raynaud’s when he was in high school or maybe college.
My Mother
My mother was the oldest of 6 kids and lived a life of serving her siblings and then us. She spent very little time on herself and ignored most of her aches and pains. I have vivid memories of her massaging her back on the corners of door frames and laying in a back traction device. By her late 40’s we had a Spinalator (a gift from her parents, who believed it was the gift everyone needed that Christmas) and she uses it regularly to this day. Mom had a serious digestive problem around 50 that was diagnosed as Giardia, caused by a parasite in water. It was a rare diagnosis, but possible because we lived on a farm with animals and drank water from water hoses. But I’ve always wondered if this wasn’t her first digestive flare. She struggled with itchy skin at her bra line but called it Eczema, not Psoriasis. She had hand surgery a couple of times and I now think that was a surgeon’s attempt to treat arthritis. She had something they called trigger finger but when I mention it to other doctors they wrinkle their forehead (I think because of where or what finger it affects on her). As she explains it, she develops bumps on her tendon sheath that cause her fingers to lock up and the surgeon “cleans” those bumps off, which does give her motion back. I jotted down the term stenosing tenosynovitis. She also had carpal tunnel surgery in her ~50s. Mom finally had a very serious setback at age 75 that was initially diagnosed as Crohn’s. She started a very restrictive Crohn’s diet and steroids but later testing did not indicate Crohn’s Disease. She had a camera endoscopy, that cleared her of the Crohn’s diagnosis and only found a single ulcer on her sigmoid colon. She is seeing a rheumatologist for the first time in her life at age 76. He did not immediately diagnose PsA but plain old osteoarthritis. Her hands look pretty awful and he thinks the arthritis is the result of a life of hard work. She does not have RA, but he is exploring whether she may have pseudogout. Her x-rays indicate calcium phosphate crystals and chondrocalcinosis on her knees. He also asked about her parathyroid because it controls calcium metabolism. This makes me want to go back and review all my MRIs and Xrays for similar terms. I have not yet been able to confirm that she carries the HLA B27 gene but I am confident that she is my link to our family history of autoimmune disease.
Brother 1, wife probable family history of autoimmune disease
He was diagnosed with gout in middle age and several of his children have psoriasis.
Brother 2
He was also diagnosed with gout in early middle age, has high blood pressure and is beginning to have some cardiac issues in ’40s
Sister 1, husband probable family history of autoimmune disease
She does not seem to have any issues but has a son with serious digestive issues.
Sister 2
She has some spinal issues surfacing after age 40. She is not yet seeing a rheumatologist.
Me
There is a more detailed progression of my illness from childhood to the present. But on the summary level, I am HLA-B27 positive, have psoriatic arthritis, psoriasis, mild gout, and was initially diagnosed with SIBO (small intestine bacterial overgrowth). I have done extensive experimenting with elimination protocols, supplements and my diet since 2016. The following links offer a more detailed narrative of my childhood, young adult, lifestyle during the early disease development and the disease transition through menopause.
Son 3
The family history of autoimmune disease continues with my son who is HLA B27 negative (we may retest) but diagnosed with juvenile arthritis and given his symptoms and my history, the doctor believes it is psoriatic arthritis. Did not start Humira until the Spring of 2019, after his high school football career ended. He has had noticeable improvement and can run without pain.
My Daughter-in-Law, married to Son 2
It is very unfortunate, but my son’s wife is HLA B27 positive. She was initially diagnosed with fibromyalgia while in high school or college but has since received a Psoriatic Arthritis diagnosis. Part of my motivation to take on this blog is because it is clear that our family history of an autoimmune disease will continue into the next generation. My son has not yet shown signs of the disease except that he is very asymmetrical and has been all his life. He keeps one side of his body still when walking and running, he even crawled with one arm. It concerns me, but it was never serious. I didn’t know about our family history of autoimmune disease when he was a baby so I never considered a rheumatologist. I will encourage him to get screened, especially once they start a family.
Son 1
He had back problems since college but continues to tell me that he thinks it is due to sitting at a desk for prolonged periods rather than potential ankylosing spondylosis. Stay tuned.
I truly hope this detailed accounting of my family history of autoimmune disease will connect with someone who is doing research on the subject. It is my hope that someone will find some common threads and connect the various manifestations and triggers for the disease, and ultimately move the needle towards a cure.