Sunday, March 15, 2015

Family Medicine: Following Patients with Ehlers Danlos Syndrome by K.M. Babbitt, MSIII and A.P Jonas, MD

Family Physicians follow a lot of patients with rare and unusual chronic disease states.  Wright State University Boonshoft School of Medicine third year student Katherine (Casey) Marian Babbitt has worked with Dr. Jonas on a quality improvement project about one rare and challenging disease. This month we're looking closer at Ehlers Danlos Syndrome to develop a checklist for patient signs and symptoms that helps both patients and physicians.  This will enable Family Physicians to better identify what problem areas and concerns each patient with EDS may have at each chronic disease management visit.  It also reminds patients and physicians to remember multiple aspects of the EDS when managing acute problems.

We'll publish the fifth draft of the checklist to invite comments from patients and physicians to help us fine-tune the document before finalizing it and publishing it online.

What do you think of the current content? (not the format since the Word document didn't load perfectly)  Please make comments, especially hypermobile persons and their families and family physicians.  This is a complex disease and we are complex people, so we start with a complex form.

The patient would have one of these on their cell phone or computer or hard copy and note what symptoms and signs are "leading the way" in a negative sense.  The physician would follow the form inputs from the patient via the patient portal of their EMR or hard copy and add/ subtract/prioritize care based on what seems to be happening.  Etc.



Ehlers-Danlos Signs and Symptom Checklist

Date                ________________

Name             _____________________________________________



Neurological system
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N             Obsessive Compulsive Disorder                                    o
o                    o                   Y  N             Major Depressive Disorder                                                               o
o                    o                   Y  N              Social Anxiety Disorder                                                                                            o
o                    o                   Y  N              Body Dysmorphic Disorder                                                             o
o                    o                   Y  N              Chiari I Malformation                                                                                                                        o
o                    o                   Y  N             Syringomyelia                                                                                                                                                                         o
o                    o                   Y  N             Tethered Cord Syndrome                                                                                           o
o                    o                   Y  N             Migraines                                                                                                                                                                                                                    o
o                    o                   Y  N             Syncope Dizziness                                                                                                                                          o
o                    o                   Y  N             Paresthesia                                                                                                                                                                                                      o
o                    o                   Y  N             Dysautonomia                                                                                                                                                                         o
o                    o                   Y  N             Decreased Vibrational sensation                                    o
o                    o                   Y  N             Other________________________            o

Musculoskeletal System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N             Joint Instability                                                                                                                                                                    o
o                    o                   Y  N             Chronic Muscle Pain                                                                                                              o
o                    o                   Y  N             Chronic Muscle Fatigue                                                                                             o
o                    o                   Y  N             Chronic Muscle Weakness                                                                             o
o                    o                   Y  N             Dystonia                                                                                                                                                                                                                      o
o                    o                   Y  N             Osteopenia/Osteoporosis                                                                                            o
o                    o                   Y  N             Osteoarthritis                                                                                                                                                                          o
o                    o                   Y  N            Bunions                                                                                                                                                                                                                                   o
o                    o                   Y  N             Flat Feet                                                                                                                                                                                                                             o
o                    o                   Y  N             Scoliosis                                                                                                                                                                                                                      o
o                    o                   Y  N             Kyphosis                                                                                                                                                                                                                     o
o                    o                   Y  N             Early Degenerative Disk Disease                o
o                    o                   Y  N                  Herniated Disks                                                                                                                                                                      o
o                    o                   Y  N             Other________________________            o

Cardiac System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N              Mitral Valve Prolapse                                                                                                                        o
o                    o                   Y  N             Tricuspid Valve Prolapse                                                                                           o
o                    o                   Y  N              Aortic Root Dilation                                                                                                                          o
o                    o                   Y  N              POTS
o                    o                   Y  N             Other________________________            o

Optical System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N             Scleral fragility                                                                                                                                                                       o
o                    o                   Y  N             Corneal deformation                                                                                                                           o
o                    o                   Y  N             Other________________________            o
Vascular System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N             Arteriole rupture                                                                                                                                                         o
o                    o                   Y  N             Abdominal Aortic Aneurism                                                  o
o                    o                   Y  N             Neurally Mediated Hypotension                                    o
o                    o                   Y  N             Varicose Veins                                                                                                                                                                       o
o                    o                   Y  N             Other________________________            o

Metabolic System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N              Early Lipid Abnormalities                                                                            o
o                    o                   Y  N             Vitamin C Deficiency?                                                                                                           o
o                    o                   Y  N             MTHFR?                                                                                                                                                                                                                    o
o                    o                   Y  N             Drug Sensitivity                                                                                                                                                       o
o                    o                   Y  N             Other________________________            o

Gastrointestinal System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N             Irritable Bowel Syndrome                                                                              o
o                    o                   Y  N             Constipation                                                                                                                                                                                        o
o                    o                   Y  N             Gastritis                                                                                                                                                                                                                                   o
o                    o                   Y  N             Gastroesophageal Reflux Disorder            o
o                    o                   Y  N             Delayed Gastric Emptying                                                                             o
o                    o                   Y  N             Other________________________            o


Gynecological System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N             Premature Rupture of Membranes                        o
o                    o                   Y  N                  Rapid Labor and Delivery                                                                             o
o                    o                   Y  N             Uterine Rupture                                                                                                                                                                      o
o                    o                   Y  N             Other________________________            o

Dermatological System
New       Old         Stable                                                                                                                                                                                                                                                                                                                  Doctor Use
o                    o                   Y  N             Hyperextensible Skin                                                                                                             o
o                    o                   Y  N             Translucent Skin                                                                                                                                                         o
o                    o                   Y  N             Fragile Skin                                                                                                                                                                                        o
o                    o                   Y  N             Soft/Velvety feel of skin                                                                                             o
o                    o                   Y  N             Hemosiderin Staining                                                                                                             o
o                    o                   Y  N             Stretch Marks                                                                                                                                                                         o
o                    o                   Y  N             Atrophic scarring                                                                                                                                                        o
o                    o                   Y  N             Wound dehiscence                                                                                                                                          o
o                    o                   Y  N             Prolonged bleeding                                                                                                                             o
o                    o                   Y  N              Easy Bruising                                                                                                                                                                                  o

o                    o                   Y  N             Other________________________            o

6 comments:

  1. motion sickness, "brain fog", double jointedness, dislocations, tendonitis, TMJ, joint pain, muscle tenseness, low blood pressure, nearsightedness, diarrhea, mast cell activation disease, malabsorbtion, gluten sensitivity, uriticaria, eczema, dark circles under eyes, thin hair

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  2. To add to the above:
    Gum sensitivity, ineffective "cain " pain injections, gum sensitivity, easy tearing of stitches, incompetent cervix, extended surgical recovery, keloids, excessive scar tissue, ovarian cysts, repetitive subluxations, high pain tolerance, non-recouperative sleep, fall asleep easily from fatigue but not staying asleep, preterm labor, slight anemia (consistent 10-11 hemoglobin)

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  3. Vitamin D deficiency (under 10)

    ReplyDelete
  4. Short Term Memory Loss, Poor Concentration, Crainiocervical Instability, Blurry Vision, Eye Strain, Broken Blood Vessels, Tachycardia, Spasms, Muscle Cramps,Involuntary Movements, Tongue Coating, Frequent Yeast/ Uti ? Kidney Stone, Adenomas, (Pituitary, Breast, Ovarian Cysts) Vitamin Deficiencies B, D, C Neuropathy, Raynauds, Ganglion Cysts, Carpul And Cubital Tunnel, Pinched Nerves, Sciatica, Extreme Pez Cavus, Arthritis, Chondromalacia, Patellofemoral Syndrome, To Name A Few, The List Goes on

    ReplyDelete