Hi lovelies! I have so much in which I
want to share with you guys... unfortunately I will not be able to do
it within this one post. However, this post is certainly a start,
anyway!
Perhaps you remember the petition I initiated a few months back, the one where I wrote about the need for the VAC Clinic at Children's Hospital Boston to have an informed psychologist as part of their staff. As a well seasoned doctor once told me,
“what good is it to have a patient who is physically healthy if they are so emotionally wrecked inside that they are unable to get out of bed in the morning?”
Chronic illness and depression practically go hand in hand, but with proper treatment from trained professionals (as research demonstrates) one can indeed live a life engulfed in prosperity and jubilation.
The reality is, though, that the mental
health portion of this condition is largely ignored. In result, a
great deal of patients struggle with hefty amounts of depression,
anxiety, and other disorders that can be utterly crippling. No one
should have to live life that way, yet so many people with Klippel do
as they are unable to find the proper help in regards to dealing with
this condition (and, unfortunately, there is not much available).
That is why I asked Boston Children's Hospital to step in and, well,
step up.
I sent my petition to Dr. Fishman
recently and was so touched by how responsive he was in regards to
this matter. He agreed with my reasoning wholeheartedly, and was
willing to help me fight for this cause, as he too believes it in
very deeply. For those of you who have not met Dr. Fishman, I will
tell you this much: he is a phenomenal human-being. Aside from being
incredibly skilled as his work, he is a fabulous humanitarian that
genuinely cares about the needs of other people.
I am not quite sure he would want you
to tell me this, but he can get pretty emotional when it comes to his
patients. At the last meeting, he cried when he saw images and what
not of how much Sirolimus has helped various patients of his; I know
this to be true because he told me when I ran into him the other day.
Back to the petition, though. Dr.
Fishman sent out an email to an array hospital leaders. He also had a
45 minute meeting with the Chief of Psychiatry, David Demaso. Dr.
Demaso now wants to have a meeting with me in regards to this matter,
and is very receptive in helping to find a tangible solution to this
problem.
Had Dr. Fishman not been so active in
spreading the word about my petition (along with being incredibly
supportive and giving me the courage to believe in myself), I would
not have this astounding opportunity to meet with such a high-ranking
Dr. within the psych. Department. Dr. Fishman and Dr. Demaso are
incredibly willing to implement the change in which is so desperately
needed in order to give VAC patients the best all-around care
possible.
So, basically, change is immenent
people! ( : This is fantastic news for patients/family members of
patients of Vascular Anomalies patients at Children's Hospital
Boston. I will keep you guys updated as to how my meeting with the
highly-esteemed Dr. Demaso goes! I do not yet have an appointment set
up with him but plan to make one tomorrow.
To read my previous thoughts on this matter, please click here to read my Calling You Out BCH Post I did several months earlier
Also, click here to ready the petition I did
To read my previous thoughts on this matter, please click here to read my Calling You Out BCH Post I did several months earlier
Also, click here to ready the petition I did
Below is a picture of Me and the lovely
Dr. Fishman at the KT Conference approximately three years ago. Unfortunately my eyes are shut in it! : (
More soon, Arianna
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