Follow-Up to Guardian

Hi ______,

This morning I spoke with the Guardian's Letters Editor __________
who refused to publish my letter regarding Ben Fogle's leishmaniasis
as there was little space for letters about "skin infections".

I'd like to highlight that the letter was not about a skin infection,
rather an indictment of how one man's ego and desire for publicity
coupled with adulating journalism can lead to very dangerous
misconceptions being spread, in this case about a terrible disease.

By overplaying the dangers of the disease, the article will have
scared many people away from travel and the massive (though clichéd)
broadening of horizons that it brings. Not once was it mentioned how
incredibly rare leishmaniasis is in Britons, or that generally, even
if caught, it is relatively little to worry about.

Neither was it mentioned that Fogle is most likely the luckiest person
to have the disease. He has been treated relatively quickly and
efficiently. He was of course unlucky in his relapse. However, there
are twelve million people in the world who are currently suffering
from the disease who have little chance of correct diagnosis and even
less chance of adequate treatment, due solely to geographic and
economic factors, neither of which afflict Fogle.

Rather than raising awareness, the article has done nothing but
further muddy the already dirty waters of neglected diseases.

Clearly the facts surrounding the disease have been misinterpreted. I
would like the opportunity to redress the balance by writing a few
hundred words about the disease and the dangers suffered by those it
effects, and if space allows, the more general points of the safety
aspects and of course virtues of travel abroad. It would be good if
this could appear within the Guardian's G2. It will not be an attack
on Ben Fogle or the Guardian as maybe my previous email implied and
will still portray the fact that the disease and its treatment are
incredibly severe.

...

Regards,

Girish
http://www.justgiving.com/jammastergirish-msf

Response to Guardian Interview with Ben Fogle

"The doctor told me, 'Unfortunately, the worst news is - ' and I thought: what? It can't get any worse! He said it's a variety called vianna, which is the worst strain of leishmaniasis. It affects the face. It will go straight to the nose and the lips, and he basically said it leads to facial mutilation. Those were the words he used. Then he described the treatment, which is hideous, and showed me a bottle of the poison, with a skull and crossbones on it."

Every day for five weeks, Fogle received the poison on a drip - a form of chemotherapy so powerful that some patients don't walk again for two years. Every night he would vomit. By week two his body was aching and he was in agony, and by week three he had pneumonia. Yet the doctors cleared him to go, and five days after completing the treatment Fogle set off for the south pole. -- The Guardian's G2 (15th June 2009)

Dear Sir/Madam,

As a fellow sufferer of leishmaniasis, I am becoming increasingly angered by the scaremongering and downright lies that Ben Fogle is spreading about the disease in his attempt at public sympathy and therefore book sales.

I am referring to the paragraph beginning with the quote, "The doctor told me...," and the one that follows it in today's (15th June 2009) G2.

Viannia does not directly affect the face. In five per cent of cases, it can lead to the mucocutaneous form, which does affect the face. Yes, "L. braziliensis [a viannia form] is the most important cause [of mucocutaneous leishmaniasis]," (Oxford Handbook of Tropical Medicine, Eddleston, et al). However, "we estimate that less than 5% of patients who develop a L. v. braziliensis primary skin lesion develop mucosal disease," (Infectious Diseases, Gorbach, et al).

The pentavalent antimonial treatment that I am assuming Ben had is a form of chemotherapy but then so is taking antibiotics. Use of the word "chemotherapy" without definition by the media is dangerously misleading.

"Some patients don't walk again for two years," says Ben about the long-term effects of his treatment. I have not found any evidence of this and neither did my consultant feel the need to mention this to me before my own treatment.

Leishmaniasis is an incredibly complex disease of the third-world. It kills many people unnecessarily in the Middle East, South America and Asia. The treatment is eighty years old, exceedingly toxic and very expensive. As leishmaniasis is a disease that affects the poor, there is no money in looking for new treatments.

I find it incomprehensible that Ben Fogle uses his platform as a celebrity to do nothing but whine about his own (relatively lavish) experiences in this latest wave of interviews, rather than focus on the twelve million people around the world who share his symptoms yet have no chance of treatment or even proper diagnosis.

Regards,

Girish Gupta, Manchester
http://www.justgiving.com/jammastergirish-msf

Press: MEN

Appeared in Tuesday's Manchester Evening News.

Press: Maidenhead Advertiser & Slough Express

Appeared in Thursday's Maidenhead Advertiser (top) and Friday's Slough Express (bottom).

Formal Request For Mitigating Circumstances for 2009 Exams

Hi,

A few months ago I was tentatively diagnosed with a rare flesh-eating
tropical disease called leishmaniasis. It became apparent to me
mid-November (2008) when a wound began opening up on my back which has
had to be redressed every two days since then. I was repeatedly told
by doctors that it was most likely an infected hair follicle and so
they were not keen to refer me to a dermatologist. Mid-February a
second wound appeared and this made me force them to refer me. The
dermatologist suspected leishmaniasis and gave me a biopsy to confirm
the strain and urgently referred me to an Infectious Diseases expert
who I am now under the care of (Dr _____________ at North
Manchester General). Results of that biopsy came through
"inconclusive" over three weeks later. A further biopsy was taken by
the Infectious Diseases department at North Manchester General which
another three weeks later came back with the same result. Another
sample was then sent to the country's top histopathologist Professor
___________ based at St Thomas' in London. This came back a
fortnight ago with the same inconclusive result.

As the strain (or even the disease) cannot be confirmed in the lab, I
will most likely be forced to opt for an incredibly harsh three-week
IV treatment which the consultant refused to give me a few weeks ago
when I wanted things sorted. This was due to its very severe
side-effects. However, now that he has no other avenues to explore, I
am being offered it. I will most likely take it sometime over the
summer with my fingers crossed. I do have a meeting with Dr
__________ on May 27th in which we will discuss the options.

The situation has been incredibly stressful, not just in visiting
either the walk-in centre, surgery, dressing clinic or various
hospitals every couple of days but primarily in learning about the
disease, spending time when attempting to learn physics reading
infectious and tropical disease textbooks.

The treatment I have received from the University of Manchester-owned
Robert Darbishire Practice has done a lot to exacerbate the situation,
as has that from the Walk-In centre at Manchester Royal Infirmary.
Three doctors at Robert Darbishire, and two at MRI Walk-In, were
unable to admit they had no idea and gave advice to 'wait and see' or
'have another blood test'. The first led me to A&E a week later and
the second urged me to force them to refer me. The surgery's recent
policy of refusing to dress my wounds, advising me to go to Moss
Side's Health Centre open for dressings for 45 minutes every day, has
ruined any sense of timetabling that is expected by the University and
my own studies.

Waiting for biopsy results has been excruciating, as was finding out
that the country's top man found nothing ten weeks after the first
tentative diagnosis. Now they're clutching at straws.

I appreciate your help in allowing a couple of extensions over the
year but I now ask you to take the above into account with my exams.

I shall be bringing in evidence of the above to the Physics school
office at some point over the exam period.

Thanks

Girish
http://www.justgiving.com/jammastergirish-msf