Eosinophilic Fasciitis

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mikannp5
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Joined: Thu Feb 13, 2020 6:40 am
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by mikannp5 on Thu Feb 13, 2020 7:39 am

Eosinophilic Fasciitis

My dad, who is in his early 60s was diagnosed with Eosinophilic Fasciitis the summer of 2019. His symptoms first began suddenly in September of 2018, and grew rapidly over time, landing him a lucky spot with a specialist at the Kay Clinic in Edmonton, Ab.

"Eosinophilic Fasciitis is a rare disorder characterized by inflammation of the tough band of fibrous tissue beneath the skin (fascia). The arms and legs are most often affected. Inflammation is caused by the abnormal accumulation of certain white blood cells including eosinophils in the fascia. Eosinophilic fasciitis eventually causes the skin to swell and slowly thicken and harden (induration). The disorder most commonly affects middle-aged adults. "

Some symptoms "include pain and swelling and inflammation of the skin, especially of the arms and legs. The arms and forearms are affected more often than the legs and thighs. The hands and feet are usually unaffected. ( his are) Affected areas may initially become tender. Affected individuals may develop characteristic shallow grooves or furrows in the skin that run along the paths of underlying veins (venous grooving). Affected skin may become reddened (erythema) and warm and gradually thicken and harden (induration). Eventually, the skin may lose its elasticity and develop a characteristic woody, puckered, or orange peel texture. These progressive skin changes can potentially limit the mobility of the arms and legs."

On top of this, he also experiences constant burning in his legs and feet, extreme exhaustion, breathlessness and cognitive impairment.

All of his symptoms add up to the diagnosis of our amazing Specialist, Who has put him on varying doses of Prednisone and Methotrexate. Neither drug has shown any positive affects. He has also received some type of a blood infusion.... ( not sure what exactly) this leaves him feeling like absolute garbage.

At any rate, the doctor is stumped, and feels his diagnosis of Eosinophilic Fasciitis is not intact what we are dealing with. We are desperate.
My dad has been tested/checked for many many things. Many of which have been ruled out. He Has had an MRI, CT Scans, Ultra Sounds, even a biopsy.

Has anyone seen or heard of anything like this? Any insight would be much appreciated.

Thanks

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talkhealth
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Joined: Thu Nov 04, 2010 3:29 pm
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by talkhealth on Tue Apr 14, 2020 11:33 am

Re: Eosinophilic Fasciitis

Hi mikannp5,

Thank you for posting your question on the forum. We have noticed that you have yet to receive any replies.

Sorry to hear about your fathers condition and the frustration you must all be feeling relating to the diagnosis. While we are unable to give out specific medical advice, it might be worth contacting one of our of charity partners, National Rheumatoid Arthritis Society who may be able to help you or point you in the right direction. As Eosinophilic Fasciitis is classed as a rare autoimmune rheumatic disorder this would be a good place to start. Please find link below to the NRAS website:

http://www.talkhealthpartnership.com/Charities/nras.php

We hope your father gets to the bottom of whether his symptoms are indeed Eosinophilic Fasciitis.

Kind regards
talkhealth
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mikannp5
Posts: 2
Joined: Thu Feb 13, 2020 6:40 am
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by mikannp5 on Thu Apr 16, 2020 4:56 pm

Re: Eosinophilic Fasciitis

Thank you so much for your reply. I will reach out to the link suggested.

Much appreciated.

Prycejosh1987
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Joined: Mon Sep 14, 2020 6:29 pm
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by Prycejosh1987 on Fri Sep 18, 2020 6:22 pm

Re: Eosinophilic Fasciitis

Try a lot of vitamin C and also a lot of inflammation creams.

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