I've been reading up more and more about the disease 'that isn't one' or at least is very difficult to diagnose.
Other that vascular fragility , difficulty in healing (scaring in can take up to 8 weeks before the removal of sutures, dehyssing of surgical sites), generalise pain over the whole body (92%) and specifically and more present articular pain, muscle pain 82%, Abdominal 77%, Throasic 71%, Genital, 75%, Migraine 84%, hypersensitivity of the skin 39%...I have translated some of the information from the table below:
Generalized fatigue 96%
Perception and difficulties controling movement, pseudo-sprain 86%, double jointedness of subluxation of joints 90% especially in the sacro-iliac and lower limbs
Hypermobility 97%
Alteration of the skin: thinness 91Ù, fragility 87%, stretchmarks 64%, difficulty healing 85%
Hemmoraging 92%
Family heridity 97%
| Les six signes et la gÉnÉtique (sur 644 patients avec un SED) |
| - Les douleurs (tout le corps est douloureux !) : articulaires et pÉriarticulaires (98%), 82% cotÉes à 3 ou 4); musculaires (82%), abdominales (77%), thoraciques (71%), gÉnitales (75%), migraines (84%), hyperesthÉsie cutanÉe (39%). Les douleurs articulaires sont les plus frÉquentes. Les femmes souffrent plus que les hommes. |
| - La fatigue (96%) |
| - Les troubles proprioceptifs et du contrÔle du mouvement (dÉcrits par Ehlers le 15 dÉcembre 1900) : pseudo-entorses (86%) ; luxations(90%). |
| - L’hypermobilitÉ (97%) |
| - Les altÉrations de la peau : minceur (91%) ; fragilitÉ (87%) ; vergetures (64%) ; retard de cicatrisation (85%). |
| - Les hÉmorragies, dÉcrites par Ehlers le 15 dÉcembre 1900 (92%). |
| - Le caractÈre familial (incluant les formes frustes, incomplÈtes ou partielles) : 97% des cas. |
Other than what is recapped above they are talking about digestive involvement including (and this freaked me right out!) ruptured MEGA colon, high incidence of galbladder disease and stones (mega stones), digestive fragility, dyspepsia...
In the lungs they are speaking of pseudo-asthma and difficulty breathing
Cardiac vascular fragility
Sphincter/urinary incontenence!
and a whole lot more...
For those of you who find that you recognise more than 3 common symptoms they suggest getting a diagnosis.
They consider that this is one of the most underdiagnosised diseases around being that it is genetic but does not show a genetic marker (yet).
They got me at the difficulty heal, dehyssing, fragile colon, weak & painful joints and exhaustion...
For more info there is a great site and they do translate it or part of it into English...the top specialist is called Dr Claude Hamonet...I copied this info from his site.
Sharon