The Lupus Encyclopedia
I cannot stress enough /how valuable this book written by Dr Donald Thomas, and published by Johns Hopkins Press is. (Note the American spelling. I spent ages searching for this fruitlessly because I typed “encyclopaedia”.) It gives the reader an understanding most things involved in lupus, and helps us understand what rheumatologists are talking about.
In addition to the book, Dr Thomas has a blog: The Lupus Encyclopedia Blog.
I have found the anti-inflammatory diet in this blog of particular use.
Local Support Groups
You’ll find an endless number of lupus support groups online, particularly on Facebook. Many of them are closed groups, so what you share stays in the group. You might need to try a couple of groups before you find one which meets your needs.
For specific medical advice, go to your rheumatologist or your GP, but for emotional support from people who’ve been there and done that, a local support group is unsurpassed.
Care Plan
In Australia, if you are diagnosed with a chronic illness such as lupus, you qualify for a government-funded care plan. Your General Practitioner will work with you to decide what allied health care you most need and give you the appropriate referrals. A chronic illness care plan gives you up to five visits per year to allied health services, such as dietetics, physiotherapy, exercise physiology or podiatry.
If your health condition involves mental illness (such as depression which is very common in people with chronic illnesses), you may also qualify for a mental health care plan, which again can give you five visits to a psychologist. (It’s possible to extend that to more visits if necessary.)
Also check with your GP about vaccinations. The criteria vary from year to year, but you may qualify for a free flu vaccine and having extra COVID vaccine doses. Lupus was one of the criteria for expedited COVID vaccines at the start of the pandemic, and if you are taking immunosuppressant drugs, you may qualify for the free flu vaccine.
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Iris Carden, Author 