RKD

HOW MY EDS AFFECTS ME

HOW MY EDS: EHLERS-DANLOS-SYNDROME-DISEASE: H-EDS (HYPERMOBILE) WITH C-EDS (CLASSICAL) AND V-EDS (VASCULAR) CRITERIA-EFFECTS, FEATURES OF MARFAN SYNDROME: AFFECTS ME:

NOTE: MY DIAGNOSIS IS PROFESSIONALLY DIAGNOSED AND IS CONSIDERED 'SUPER-SUPER-RARE' ACCORDING TO A TOP LEADING GENETECIST. I WAS GENETICALLY TESTED TWICE AND SO FAR, THERE IS NO GENE MARKER FOR THE KIND I HAVE, BUT I FALL INTO THREE WHOLE EDS CATEGORIES.

1. INSOMNIA SINCE BIRTH, INABILITY TO FALL OR STAY ASLEEP OR GET COMFORTABLE OFTEN WAKING UP WITH SEVERE PAIN OF DIFFERENT KINDS

2. INCORRECT CURVATURE-SCOLIOSIS IN MY NECK, SPINE, ARMS, FEMALE ORGANS, LEGS

3. ENTIRE BODY INSTABILITY: I WAS ALSO VERY FLOPPY AS A BABY AND IT TOOK ME A LONG TIME TO WALK

4. INABILITY TO SIT NORMALLY AND STAND FOR LONG BECAUSE OF PAIN IN MY LEGS, NUMBNESS, AND BLOOD POOLING

5. CHRONIC PAIN OF ALL KINDS: SEVERE STOMACH MIGRAINES AS A CHILD, MUSCLE-JOINT-NERVE-PARALYSIS PAIN, WRIST-ARM PAIN, MIGRAINES, CONSTANT VASULAR DISEASE PAIN IN MY HANDS AND FEET, CHEST PAIN, SHOULDER SUBLUXATIONS PAIN, SEVERE SCALP PAIN AND SENSITIVITY, DIFFICULT AND OR PAINFUL BREATHING PAIN FROM BRADYCARDIA OR SPORADIC VOCAL CORD MOVEMENT-PARTIAL OBSTRUCTION-LARYNX DYSFUNCTION: I HAVE BLACKED OUT AND LOST CONSCIOUSNESS MANY TIMES FROM MOMENTS OF EXTREME PAIN AND EXCRUCIATING PAINFUL DRUG REACTIONS

6. BRAIN INJURY: SEVERAL MAJOR CONCUSSIONS WITH PERMANENT DAMAGE FROM CO-CONDITIONS

7. CHRONIC FATIGUE AND BRAIN FOG

8. EXTREME WEAKNESS WITH THE PAIN

9. SEVERE UNHEARD OF ADVERSE DRUG REACTIONS TO NEARLY ANY DRUG, MEDICATION, SUPPLEMENT, CONTRAST, AND NATURAL COMPOUND, FRAGRANCE ALLERGY, MEDICAL TAPE, OTHER: TRIAL PRESCRIPTION, HOSPITAL PAIN DRUGS, AND NATURAL PLANT COMPOUND TYPE DRUGS HAD LITERALLY NO EFFECT ASIDE FROM CAUSING MORE PAIN, INCREASING MY BLOOD FLOW DISORDERS AND PAIN DUE TO VASORESTRICTION OR VASCULAR DYSFUNCTION, SEVERE ALLERGIC-ANAPHYLACTIC REACTIONS, AND I ALSO HAVE GONE LIMP AND PASSED OUT BOTH TIMES WITH POST-ANESTHESIA DRUG EFFECTS

10. BRADYCARDIA-TACHYCARDIA, SINUS TACHYCARDIA

11. AUTONOMIC DYSFUNCTION AND DYSAUTONOMIA

12. TEMPERATURE DYSREGULATION

13. HYPOVOLEMIA AND SEVERE BLOOD POOLING

15. FUNCTIONAL NEUROLOGICAL DISORDER

16. NON-EPILEPTIC-SEIZURES: ALL DIFFERENT KINDS: ABSENCE, PART TONIC-CLONIC, COMBINATION WITH PARALYSIS

17. TEMPORARY FULL BODY PARALYSIS, SUDDEN DROP PARALYSIS, AND PERIODIC PARALYSIS OFTEN WITH SEIZURES FOR SEVERAL MINUTES TO SEVERAL HOURS AT A TIME: I HAVE INJURED MYSELF, LOST CONSCIOUSNESS, HAD TROUBLE BREATHING, RUPTURED BLEEDING BLOOD VESSELS ON MY HANDS AFTER 3-5 HOURS ONES, AND IT OFTEN INCREASES THE PAIN AND WEAKNESS IN MY ENTIRE BODY AND OTHER CONDITIONS

18. LOSS OF FEELING-FUNCTION SOMETIMES SEVERELY IN BOTH MY ARMS AND LEGS

19. ATAXIA

20. CHANGES IN-LOSS OF CONSCIOUSNESS

21. SENSITIVITY TO LIGHT

22. SUBLUXATIONS OR DISLOCATIONS

23. RASHES-HIVES, PAINFUL SKIN REACTIONS TO ANYTHING

24. EASY INJURY, BLEEDING, BRUISING, THIN BREAKING SKIN, RUPTURED BLOOD VESSELS

25. SEVERE NOSE BLEEDS

26. HIGH RISK OF MORE RUPTURES OR RUPTURE TO INTERNAL ORGANS AND BLOOD CLOTS

27. SLOW WOUND HEALING AND ATROPHIC SCARRING

28. GASTROINTESTINAL AND BLADDER DYSFUNCTION

29. VISION PROBLEMS IN MY LEFT EYE DUE TO A CONGENITAL CATARACT

30. NUMBNESS

31. NAUSEA

32. TICS

33. LIKELY MCAS, CFS, LONG COVID, UNKNOWN

34. VOCAL CORD DYSFUNCTION AND DIFFICULTY SPEAKING

35. SPORADIC VOCAL CORD MOVEMENT-LARYNGEAL SPASMS, CLOSING LARYNGEAL OBSTRUCTION, PARTIAL LARYNX DYSFUNCTION

36. ODYNOPHASIA-DYSPHASIA-DYSPHONIA

37. DIFFICULT-PAINFUL IV ACCESS

38. COMORBID CONDITIONS INCLUDING MULTIPLE SEVERE ANXIETY DISORDERS

- RKD

09-12-26