On
the 29 of February, Rare Disease Day is celebrated around the world
to bring awareness to conditions that often escape notice. The common
thread between these diseases is their lack of knowledge
in the general public and even in the healthcare field. While rare
and neglected diseases take up different spaces in the health sphere,
both experience a lack of awareness and research-based funding.
This
day is a push to raise recognition about these diseases, while
encouraging further study and attention towards their timely
treatments or final remedy. These diseases can come in a variety of
forms, and there are up to around 7 000 documented rare diseases. While these diseases are considered rare, they collectively impact
millions of people around the world.
In
some cases, the rarity and unfamiliarity of symptoms can lead to
misdiagnosis, often causing more confusion and pain for the patient
and their family. In the case of rare conditions like Primary
Lymphedema, a patient’s best chance of receiving the care they need
requires visiting a vascular
surgeon
specialized in lymphatic diseases or a high-quality multidisciplinary
Lymphedema Care Center. These Centers and specialists are few and
there are many patients who are misdiagnosed, undertreated, or even untreated. Read more about the best treatment for lymphatic edema (Lymphedema) here.
Additional
research may open doors to new methods of treatment that are crucial
to ending potential
long terms disability and very severe complications that threaten
diseases like Lymphedema. As
the case for most
rare diseases, inaccessibility to treatment due to national health
financing policies,
lack of availability of specialists, or limited data on the condition
can cause final stage III (ELEPHANTIASIS), which means suffering
disfigurement,
disability,
loss of income, and even discrimination for those affected. Read more about the best treatment for elephantiasis here.
Primary
Lymphedema is not only a rare but also a neglected disease
in many counties, specially in the world’s poorest communities.
Lymphedema can also be devastating to economies, due to long-term
mortality rates due to severe infections or physical disabilities
they can lead to if the sickness is left untreated. Read about why the world is not treating a treatable disease like elephantiasis here.
With
the help of Rare Disease Day, we can draw attention to the disparity
among disease awareness, while putting names and faces to the
millions that suffer from these conditions every day.
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CAMPAIGN
For global awareness, it is being asked that the
WHO - WORLD HEALTH ORGANIZATION,
name:
"LYMPHEDEMA - AWARENESS & CURES"
as the World Health Day campaign
KATHY BATES
LYMPHEDEMA AMBASSADOR