Living with lymphangioleiomyomatosis
BMJ 2010; 340 doi: https://doi.org/10.1136/bmj.c848 (Published 12 March 2010) Cite this as: BMJ 2010;340:c848
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Rare conditions pose particular difficulty both in diagnosis and
management. I read with keen interest the article by Harvi Carel, offering
a personal perspective of Lymphangioleiomyomatosis (LAM), a condition that
occurs with a frequency of one in a million in sporadic cases in young
females 1. I felt a particular affinity to the case as I last year, when I
was respiratory senior house officer, cared for a lady whom had LAM. A
condition at that point in my career I had no familiarity with.
Carel offers an insite to the mind of a patient with a rare
condition, and the fears they have in the "first person perspective" and
the neglect that healthcare professionals offer when faced with a rare
condition. I felt that when I was dealing with my patient with LAM that
the patient knew more than me. Although we continued the treatment as
exacebation of bronchiectasis, I felt out of my depth when dealing with
the patients underlying condition and perhaps was phased by my absence of
knowledge. This I felt may have impacted my doctor - patient relationship
intially.
Faced with this problem, I researched the condition in depth and
discussed it with my consultant. This allowed me to become informed on LAM
and offer a better theapeuctic relationship with my patient. The lesson I
took from this experience was that we may not know alot about particular
rare conditions like LAM. However we will all be faced as junior doctors
with patients whom have rare conditions. Carel highlights the potential
impact on the doctor - patient relationship. Especially when we view the
patient as nowing far more than us. The key is to accept this and
endaevour to learn more and offer a better theapeutic relationship with
your patient.
1, Johnson SR, Whale CI, Hubbard RB, Lewis SA, Tattersfield AE (Sep
2004). "Survival and disease progression in UK patients with
lymphangioleiomyomatosis". Thorax 59 (9): 800–3
Competing interests:
None declared
Competing interests: No competing interests
The Shadow of Death
Life is a terminal condition. Sooner or later, everyone dies. Each of us lives in
the shadow of death, while trying not to think of it. But some of us must
think about death, because of a life-threatening injury or illness. How can we
live while thinking about death? While death is frightening and depressing, it
is also clarifying and motivating. It helps us to focus on life and its limited
time-frame, so that we don’t waste time or take it for granted. Perhaps each
of us should spend more time thinking about our death, so that we don’t
waste our life. “Yea, though I walk through the valley of the shadow of death,
I will fear no evil: for thou art with me; thy rod and thy staff they comfort
me.” (Psalm 23:4)
Competing interests:
None declared
Competing interests: No competing interests