• Amanda Johnson Aikulola

We Get By With A Little Help From Our Friends

Maureen was working as a ER tech in a busy city hospital in 2009 when she started noticing extreme fatigue with bouts of weakness and dizziness. It was assumed that she may have contracted mononucleosis in the course of her job. Despite a shift change, following her physician's advice and resting she did not improve. She started having syncopal episodes on the job, took a leave of absence and tried switching to the outpatient clinic, which was less physically demanding. Her symptoms and recurring bouts of feeling faint with occasional syncope continued. After being diagnosed with Epstein Barr and not being able to recover for many months a nurse in the employee health office suggested she have a tilt table test. The test led to the diagnosis of Postural Orthostatic Tachycardia Syndrome, a form of dysautonomia after three years of uncertainty and frustration. She was relieved to finally have a diagnosis but was left feeling isolated and overwhelmed by her inability to manage her symptoms. Maureen met Amanda Aikulola, another patient a few months later when her cardiologist gave her information about a local support group for Dysautonomia patients at an appointment. Today she has adjusted to her condition, is back to work part time in a position that is less physically demanding and just enjoyed her first cruise since being diagnosed.

"Being a member of the DSN RI Chapter has enabled me to feel less isolated and more socially comfortable. I think the group helps new members who are struggling with the difficult journey of being diagnosed with uncommon conditions and those of us who are looking to connect with other patients." Maureen Lowe ~ member

Over a 70 million people in the world are living with one or more forms of Dysautonomia. Dysautonomia is a word used to describe a group of neurological disorders that involve the autonomic nervous system such as Postural Orthostatic Tachycardia Syndrome (POTS), Neurocardiogenic Syncope (NCS), Orthostatic Intolerance (OI) and others. Patients that develop dysautonomia secondary to other conditions such as Multiple Sclerosis, Chiari Malformation, Ehlers-Danlos Syndrome, Autoimmune Disease, and Mast Cell Activation Disorders often struggle with managing symptoms. Symptoms may affect every system in the body, are unpredictable, may come and go and can be debilitating at times or permanently disabling to some. Patients often experience unstable heart rates, blood pressures, temperature control regulation issues, syncope, chronic fatigue, dizziness, chronic headaches and more. Symptoms tend to wax and wane over time but rarely subside as can happen with some teens who develop primary dysautonomia or POTS after contracting an infection.

Christine was fainting multiple times a day despite her implanted pacemaker. Running out of hope, she met a group of patients who she had become friends with in an online support group at Nordstroms Cafe in the Providence place mall in August of 2012. She was unable to safely venture out of the house alone, no longer safe to work, was isolated due to her health and becoming unsure of her future at 36. Today she is co-leading the Dysautonomia Support Group RI chapter, recently completed her personal training certificate, despite hip surgery last year and has an active social life. Christine always has a smile to offer but lives with two disabling conditions, Ehlers-Danlos Syndrome and Dysautonomia.

"Life with EDS and POTS is filled with ups and downs but has made me realized how strong I am.” Christine ~ patient, RI chapter co-leader

Ehlers-Danlos Syndrome (EDS) is a group of inherited connective tissue disorders, caused by various defects in the synthesis of collagen. EDS is known to affect men and women of all socioeconomic, racial and ethnic backgrounds. It is a genetic disorder that is present at birth but can often go unrecognized for years, even decades. Patients often present with a "constellation of symptoms" as they age such as joint laxity, soft skin, easy bruising, manifestations in the tissue, vascular system, GI system and other organs of those that make this elusive syndrome difficult for the untrained eye to recognize. There are currently six distinct types of EDS identified. Life expectancy is shortened with a majority of individuals living only into their forties with vascular type (VEDS), the most serious form and rarest form of EDS. Each type can cause minor to serious deficits in joint, tissue, organ and skin integrity and may impact patients' overall quality of life. A recent study done in Belgium found that 74% of patients with EDS, hypermobility type also had OI and 41% had POTS.

“Patients with complex medical conditions need comprehensive intervention. These patients have better outcomes with education, resources, support and a sense of community.” Amanda Aikulola LPN ~ patient, advocate and founder of The Dysautonomia Support Network

The Dysautonomia Support Network was founded in RI in 2012 by Amanda Aikulola, a nurse who also lives Ehlers-Danlos Syndrome, Dysautonomia and several related disorders. DSN is a patient focused organization providing support, resources, education and advocacy for patients affected by all forms of Dysautonomia and related conditions such as Ehlers-Danlos Syndrome, Mast Cell Activation Disorders and Chiari Malformation. Their volunteers are trained to help patients through every stage of their journey, from diagnosis to advocacy. The organization supplies the tools, support, education and resources they need to adapt to life with chronic illnesses and manage symptoms.

A Sip & Paint fundraiser is being held Friday June 10th at Paint The Town Studio in Cranston, RI for tickets or more info click here

To find out about DSN events in your area visit the meetings & events page on our website frequently.

To learn more about EDS, POTS, OI or other forms of Dysautonomia or find your local chapter visit www.DysautonomiaSupport.org

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