Society and culture
Media
In the Amazon Video series The Man in the High Castle, Obergruppenführer John Smiths son, Thomas, is diagnosed with Landouzy-Dejerine syndrome. In the biography Stuart: A Life Backwards, the protagonist was affected by muscular dystrophy, presumably FSHD. Patient and research organizations
The FSHD Society (named "FSH Society" until 2019) was founded in 1991 on the East Coast by two individuals with FSHD, Daniel Perez and Stephen Jacobsen. The FSHD Society claims to have advocated for the standardization of the disease name facioscapulohumeral muscular dystrophy and its abbreviation FSHD. The FSHD Society claims to have raised funding for seed grants for FSHD research and co-wrote the MD-CARE Act of 2001, which provided federal funding for all muscular dystrophies. The FSHD Society has grown into the worlds largest grassroots organization advocating for patient education and scientific and medical research for FSHD. One notable spokesperson for FSHD Society has been Max Adler, an actor on the TV series Glee. Friends of FSH Research is a research-oriented nonprofit organization founded in 2004 by Terry and Rick Colella from Kirkland, Washington after their son was diagnosed with FSHD. The FSHD Global Research Foundation was founded in 2007 by Bill Moss in Australia, a former Macquarie Bank executive affected by FSHD. It is currently directed by Mosss daughter. It was named Australian charity of the year for 2017. It is the largest funder of FSHD medical research outside of the United States as of 2018. FSHD EUROPE was founded in 2010.
Muscle involvement pattern
Why certain muscles are preferentially affected in FSHD remains unknown. There are multiple trends of involvement seen in FSHD, possibly hinting at underlying pathophysiology. Individual muscles can weaken while adjacent muscles remain healthy. The right shoulder and arm muscles are more often affected than the left upper extremity muscles, a pattern also seen in Poland syndrome and hereditary neuralgic amyotrophy; this could reflect a genetic, developmental/anatomic, or functional-related mechanism. The deltoid is often spared, which is not seen in any other condition that affects the muscles around the scapula.Medical imaging (CT and MRI) have shown muscle involvement not readily apparent otherwise
A single MRI study shows the teres major muscle to be commonly affected. The semimembranosus muscle, part of the hamstrings, is commonly affected,  deemed by one author to be "the most frequently and severely affected muscle." Of the quadriceps muscles, the rectus femoris is preferentially affected
Of the  gastrocnemius, the medial section is preferentially affected;
The iliopsoas, a hip flexor muscle, is very often spared. Retinopathy
Tortuosity of the retinal arterioles, and less often microaneurysms and telangiectasia, are commonly found in FSHD. Abnormalities of the capillaries and venules are not observed. One theory for why the arterioles are selectively affected is that they contain smooth muscle. The degree of D4Z4 contraction correlates to the severity of tortuosity of arterioles. It has been hypothesized that retinopathy is due to DUX4-protein-induced modulation of the CXCR4–SDF1 axis, which has a role in endothelial tip cell morphology and vascular branching.