Eye Care Tips and Tricks for FSHD

Dry eyes, also known as Ocular Surface Disease (OSD), is a common issue with many in the FSHD community. Symptoms are often described as grittiness, itchiness, or burning especially upon waking up in the morning and/or later in the day. Some people say it feels as if something has got into the eye such as a tiny bug, piece of dust or sand, or an eyelash. Visually, one or both eyes may, on occasion, appear to be bloodshot. There can be light sensitivity. Vision sometimes is blurry. Curiously, an eye that suddenly becomes very watery or teary can also be a symptom of dry eyes. (Teary is when an eye drips or runs affecting the adjacent nostril and the flow won’t stop for a while. It usually affects only one eye/nostril at a time).
OSD results from the “facio” aspect of FSHD –weak facial muscles specifically of the small muscles adjacent to the eyes. This causes one or both eyes to be unable to shut completely when sleeping. This in turn dries out the natural lubrication present in the eyes. (Absent another person who observes you sleeping, it is hard to note whether one’s own eyes are partly open when sleeping!)
Taking a selfie photo of one’s eyes when open (and when shut) will usually display tell-tale signs that there is eye muscle involvement. There may be eyelid droopiness (ptosis) and often it is noticeable that each eye presents differently (related to the asymmetrical nature of FSHD).
What else can cause dry eyes?
Not every health issue in a person with FSHD is the fault of FSHD. It’s important to rule out other factors, especially if they can be remedied. Other medical conditions can cause dry eyes, including:

  • diabetes
  • rheumatoid arthritis
  • scleroderma
  • lupus
  • Sjorgens syndrome
  • shingles (if occurring in eye area)
  • Graves disease
  • thyroid conditions
  • hormonal changes of pregnancy or menopause or aging
  • scar tissue related to healing of injuries to an eye or eyelid
  • some medications for other health conditions can cause dry eye
  • allergies may be a factor in addition to having OSD related to FSHD.

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