fibromuscular dysplasia support, education & advocacy
Fibromuscular dysplasia (FMD) is a complex disease that is most commonly seen in women, with systemic presentation that may include stenosis, aneurysm or dissection most commonly in the renal and carotid arteries, migraine-like headaches, dizziness, and tinnitus or a swooshing sound in the ears. Low bone density, joint laxity and degenerative disease in the spine also have been linked to the disease. FMD is considered a rare disease; however, it is also believed to be underdiagnosed.

Traduire / Traducir / Verdolmetschen / Natłumaczyć / Tulkot / переводить / 翻译

Genetics, FMD & The Need for Education by WVPeaches

Anecdotal evidence and emerging research seems to indicate a genetic predisposition towards fibromuscular dysplasia (FMD), connective tissue diseases and other syndromes, evidence of which I have seen in my own family.

I have two older sisters and we share some very real disorders that doctors have found interesting in the past. The three of us have irritable bowel syndrome, depression, migraine, high blood pressure (from a young age) and osteo-arthritis to varying degrees. Upon researching our family, we have discovered that our maternal grandmother also had irritable bowel syndrome, high blood pressure and osteo-arthritis and suffered greatly during her 86 years. Our paternal great-grandmother experienced severe depression and migraine headaches throughout her lifetime. I am the only one that has been diagnosed with fibromuscular dysplasia but encourage my sisters to have their doctors keep an eye on any symptoms that might suggest this as well. My mother had severe kidney failure but was not diagnosed with renal FMD, and at the time, we did not know to question that with her physicians.

Other ailments that are common to our family are diabetes and Parkinson’s, stroke and heart diseases. My mother and both maternal and paternal grandmothers as well as my middle sister have or had diabetes (non-insulin dependent). Many of our cousins on my maternal grandfather’s side have Parkinson’s disease. This last has been more prevalent in the males but not exclusively. My own father died at a very young age from Myasthenia gravis, but it was not thought to be genetically inherited.
During discussions in FMD Chat's Facebook group, I have noted that other patients seem to also have many of the same related connective tissue, digestive or other organ disorders. To me it seems that patients are sharing a similarity of symptoms not currently associated with FMD, and that this might suggest a connection, however tenuous, between FMD and “nerve-related” illness. FMD patients are heartened by recent research into FMD and genetic predisposition, although there are no proven connections at this time. There are still so many unknowns with this dangerous disease that patients are understandably frustrated.

The single most discussed issue in our FMD Chat patient group is the failure of the health community to have any knowledge of FMD. This alone causes more distress amongst patients than likely any other aspect of the disorder. Patient frequently are called upon to provide health care providers with information regarding FMD including the need for and types of testing and treatment. We find this especially in (but not limited to) smaller, more rural communities. It is frustrating and exhausting for the already stressed patient to have to advocate for his or her own health treatment due to lack of education in the health care field. We carry folders of test results and research to each physician we see. It feels impossible for the layperson to convince otherwise the professional of the gravity of this illness. We are heartened by the proponents and advocates amongst us who tirelessly gather and distribute new research to both patients and doctor—but we need more! More research, more education, more funding, more understanding along with better access to excellent healthcare for our disease is urgently required.