Severe conjunctivochalasis in association with classic-type Ehlers-Danlos syndrome I wonder how many people have chronic eye trouble caused by systemic disorders which are not diagnosed or investigated for? This poor patient was eventually found to be positive for Ehlers-Danlos. The collagen disorder wrinkled the conjunctiva (conjunctivocholasis) with dry eyes. The eye docs were all too ready to fix the cornea, but had not asked about symptoms in the rest of the body. Respect to them, that they are pointing this up for the rest of the trade 'Conclusion: This highlights the need for direct patient questionning...'
I think we kinda assume eye docs are interested and up on systemic disorders. Some are not and cut me dead on skin problems and joint aching and obvious vascular/cerebrospinal fluid problems, even when the child is sitting there with keratitis and flared up rosacea correlating with immune and endocrine triggers. Unfortunately, when it's a fail, we all struggle on trustingly fixing eyes and other parts of the anatomy with drugs like steroids, immunomodulators, antibiotics, that may be adversely affecting an immune disorder. (This is one reason why we are very careful to close the tear ducts after using eg steroid eyedrops just in case it helps.)
It is very difficult to get referral for immunology investigation in UK because of ignorance on symptoms, which may be mild in some parts of the body and severe in others and each specialism only does their bit. Ignorance is boundless and now we have NHS rationing on 'unnecessary' referral and the usual caps from private insurance schemes. Eg why do you want Rheumatology? She doesn't have arthritis and it's not a lupus rash. Refused. Many of us are paying a lot of money now for testing and investigation of autoimmune disease (if anyone is dealing with this, some solutions are: seek out lead docs who are setting up specialist clinics and attracting research funding, coordinating the specialisms; www.raredisease.org.uk/; Googling patient forums; plus the NHS website is more current than your GP).
Dermatology is particularly awful on this - you would assume they dealt with and diagnosed skin manifestations of systemic disorders all day every day (psoriasis, vascular, lymphatic, infectious disease, immunology, autoinflammatory). Time to shake off the 'dermaholiday' label
I think we kinda assume eye docs are interested and up on systemic disorders. Some are not and cut me dead on skin problems and joint aching and obvious vascular/cerebrospinal fluid problems, even when the child is sitting there with keratitis and flared up rosacea correlating with immune and endocrine triggers. Unfortunately, when it's a fail, we all struggle on trustingly fixing eyes and other parts of the anatomy with drugs like steroids, immunomodulators, antibiotics, that may be adversely affecting an immune disorder. (This is one reason why we are very careful to close the tear ducts after using eg steroid eyedrops just in case it helps.)
It is very difficult to get referral for immunology investigation in UK because of ignorance on symptoms, which may be mild in some parts of the body and severe in others and each specialism only does their bit. Ignorance is boundless and now we have NHS rationing on 'unnecessary' referral and the usual caps from private insurance schemes. Eg why do you want Rheumatology? She doesn't have arthritis and it's not a lupus rash. Refused. Many of us are paying a lot of money now for testing and investigation of autoimmune disease (if anyone is dealing with this, some solutions are: seek out lead docs who are setting up specialist clinics and attracting research funding, coordinating the specialisms; www.raredisease.org.uk/; Googling patient forums; plus the NHS website is more current than your GP).
Dermatology is particularly awful on this - you would assume they dealt with and diagnosed skin manifestations of systemic disorders all day every day (psoriasis, vascular, lymphatic, infectious disease, immunology, autoinflammatory). Time to shake off the 'dermaholiday' label
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