ASK THE ADVOCATE:
I have Ehlers-Danlos Syndrome (EDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). POTS, EDS, and MCAS are so unheard of many doctors have no idea what to do. I have been to so many doctors…sigh.
On a good day, my fingers, ankles, and hips will pop out of joint a couple of times a day. If I bump my foot on a bed frame, I might have enormous bruises since my skin is so thin. The POTS causes my blood pressure to go down especially when I stand. I also have cognitive issues.
Unfortunately, Social Security does not have a specific listing for EDS, POTS or MCAS, but there are listings for the different body systems that are impacted by the disorder. In order to file for your condition, you need to focus on the severity of the symptoms and which body systems are most severely impacted.
There are at least six types of EDS, all caused by defective connective tissue. The most common form, Hypermobility Type (EDS-HT), also known as EDS-III. EDS-HT is considered the most “benign” form. It does cause chronic pain, injuries, and other symptoms. Treatment for people with EDS-HT wear joint braces to reduce dislocations and are taught to manage their pain.
Postural orthostatic tachycardia syndrome (POTS) is a condition that affects the blood flow of a sufferer. People who have POTS can experience a diminished quality of life. The symptoms and complications of this condition may make it difficult for a person to enjoy leisure activities or complete job tasks. People with POTS are prescribed beta blockers, high-sodium diets, and compression gear to keep up their blood pressure.
MCAS, also called Mast Cell Activation Disease. Mast cells are generally heroes in the body, helping keep the immune system alert and responsive. But some people have mast cells that can perceive just about anything (foods, medications, temperatures, deep breathing) as a threat. Researchers have implicated mast cell activation issues in dozens of symptoms and conditions, from anaphylactic shock to irritable bowel syndrome as well as dysautonomia and connective tissue problems. People with MCAS are given antihistamines.
The Listing that is close is 14.06 Undifferentiated and mixed connective tissue disease. It requires involvement of two or more organs/body systems, with at least one of the organs/body systems involved to at least a moderate level of severity with at least two of the constitutional symptoms or signs i.e. severe fatigue, fever, malaise, or involuntary weight loss.
OR — Repeated manifestations of undifferentiated or mixed connective tissue disease, with at least two of the constitutional symptoms or signs i.e. severe fatigue, fever, malaise, or involuntary weight loss and one at the marked level (limitation of activities of daily living; limitation in maintaining social functioning; or limitation in completing tasks in a timely manner due to deficiencies in concentration, persistence, or pace.
It is very important that you tell your doctors about all the symptoms and disabilities you are experiencing and make sure your medical records include a diagnosis, prognosis, and complete description of your limitations, including physical, neurological, cognitive, and psychological impairments. Your medical records will be the primary source of information used in your case, and if you fail to mention any symptoms, limitations, or disabilities to your doctor, or if the doctor neglects to record them, they won’t be included. You should make sure your doctor records everything you tell him/her.
Many people suffer from multiple symptoms that make it impossible to work. SSA will determine if the combination of impairments is sufficiently disabling to keep you from returning to work.