A letter of explanation
To Whom It May Concern:
Date:
Re:
If you are reading this letter it is most likely because this person wants you to know more about his or her medical condition before you embark upon treating symptoms.
This person is suffering from Ehlers Danlos syndrome (EDS). There are six types of EDS and it is a group of inherited disorders that affect your connective tissues — primarily your skin, joints and blood vessel walls. People who have EDS usually have overly flexible joints (can result in joint dislocations and early-onset arthritis) and stretchy, fragile skin. This can become a problem if you have a wound that requires stitches, because the skin often isn't strong enough to hold them. People who have vascular Ehlers-Danlos syndrome are at risk of often fatal ruptures of major blood vessels. Some organs, such as the uterus and intestines, also may rupture. Pregnancy can increase these risks.
The primary problem in EDS joint hypermobility, results from hyper extendable ligaments, which cause joint dislocations throughout the body including within the spine. The dislocations can result in tissue damage and nerve impingement in the area surrounding the joint.
When this occurs at the level of C1-C2 in the neck, autonomic dysregulation can occur and can cause extreme autonomic sympathetic overactivity. The patient's body may initially go into hyper vigilant fight or flight mode and when this is prolonged it can result in a chronic fatigue/fibromyalgia like presentation. The person may crash and be unable to function. Vocal cords can also be affected by the condition and can result in respiratory emergencies especially when the patient can't talk to explain her difficulty breathing.
Individuals with EDS can also present with Postural Orthostatic Tachycardia Syndrome (POTS), Dysautonomia, Gastroparesis, Chiari Malformation, Mast Cell Activation or Tethered Cord Syndrome.
In addition to this condition being understandably misdiagnosed as chronic fatigue/fibromyalgia etc. it is also misunderstood to have a psychological/psychiatric basis. Patients do get upset for two major reasons:
- the loss of their ability to function physically and intellectually; and
- when they feel they are not being heard or that their credibility is being questioned.
This patient is NOT suffering from any major psychiatric disorder and her condition does NOT have any psychological/psychiatric basis.
The patient always carries information outlining treatments that have been used to successfully manage past emergencies. I trust this information will help to clarify his or her plight.
Thank you for taking the time to read this letter and to provide care and accommodations required.
Yours truly,
M.D.