• DNDi - Best Science for the Most Neglected 20 Years
  • Our work
    • Diseases
      • Sleeping sickness
      • Visceral leishmaniasis
      • Cutaneous leishmaniasis
      • Chagas disease
      • Filaria: river blindness
      • Mycetoma
      • Paediatric HIV
      • Cryptococcal meningitis
      • Hepatitis C
      • Dengue
      • COVID-19
      • Antimicrobial resistance
    • Research & development
      • R&D portfolio & list of projects
      • Drug discovery
      • Translational research
      • Clinical trials
      • Registration & access
      • Treatments delivered
    • Advocacy
      • Open and collaborative R&D
      • Transparency of R&D costs
      • Pro-access policies
      • Children’s health
      • Gender equity
      • Climate change
      • AI and new technologies
  • Networks & partners
    • Partnerships
      • Our partners
      • Partnering with us
    • Global networks
      • Chagas Platform
      • Dengue Alliance
      • HAT Platform
      • HELP Helminth Elimination Platform
      • LEAP Platform
      • redeLEISH Network
    • DNDi worldwide
      • DNDi Switzerland
      • DNDi DRC
      • DNDi Eastern Africa
      • DNDi Japan
      • DNDi Latin America
      • DNDi North America
      • DNDi South Asia
      • DNDi South-East Asia
      • DNDi Southern Africa
  • News & resources
    • News & stories
      • News
      • Stories
      • Statements
      • Viewpoints
      • Social media
      • eNews Newsletter
    • Press
      • Press releases
      • In the media
    • Resources
      • Scientific articles
      • Our publications
      • Videos
    • Events
  • About us
    • About
      • Who we are
      • How we work
      • Our strategy
      • Our donors
      • Annual reports
    • Our people
      • Our leadership
      • Our governance
      • Contact us
    • Work with us
      • Working at DNDi
      • Job opportunities
      • Requests for proposal
  • Donate
DNDi - Best Science for the Most Neglected 20 Years
  • DNDi - Best Science for the Most Neglected 20 Years
  • Our work
    • Diseases
      • Sleeping sickness
      • Visceral leishmaniasis
      • Cutaneous leishmaniasis
      • Chagas disease
      • Filaria: river blindness
      • Mycetoma
      • Paediatric HIV
      • Cryptococcal meningitis
      • Hepatitis C
      • Dengue
      • COVID-19
      • Antimicrobial resistance
    • Research & development
      • R&D portfolio & list of projects
      • Drug discovery
      • Translational research
      • Clinical trials
      • Registration & access
      • Treatments delivered
    • Advocacy
      • Open and collaborative R&D
      • Transparency of R&D costs
      • Pro-access policies
      • Children’s health
      • Gender equity
      • Climate change
      • AI and new technologies
  • Networks & partners
    • Partnerships
      • Our partners
      • Partnering with us
    • Global networks
      • Chagas Platform
      • Dengue Alliance
      • HAT Platform
      • HELP Helminth Elimination Platform
      • LEAP Platform
      • redeLEISH Network
    • DNDi worldwide
      • DNDi Switzerland
      • DNDi DRC
      • DNDi Eastern Africa
      • DNDi Japan
      • DNDi Latin America
      • DNDi North America
      • DNDi South Asia
      • DNDi South-East Asia
      • DNDi Southern Africa
  • News & resources
    • News & stories
      • News
      • Stories
      • Statements
      • Viewpoints
      • Social media
      • eNews Newsletter
    • Press
      • Press releases
      • In the media
    • Resources
      • Scientific articles
      • Our publications
      • Videos
    • Events
  • About us
    • About
      • Who we are
      • How we work
      • Our strategy
      • Our donors
      • Annual reports
    • Our people
      • Our leadership
      • Our governance
      • Contact us
    • Work with us
      • Working at DNDi
      • Job opportunities
      • Requests for proposal
  • Donate
Home > Stories

Mycetoma: A Simple Thorn Prick

The Faces of Neglect

Home > Stories

Mycetoma: A Simple Thorn Prick

The Faces of Neglect

23 May 2016
Share on twitter
Share on facebook
Share on linkedin
Share on email
Share on print

How can a simple thorn prick be so devastating?

Patients are very poor. It is common for them to come in a donkey cart.
Patients arriving at the Mycetoma Research Centre

Every Monday morning at a clinic on the dusty outskirts of the Sudanese capital Khartoum, sufferers of one of the world’s most neglected diseases flock to the only place in the world that can offer them specialized care and treatment. Patients stream through the gates limping, on crutches, pushed by worried relatives on rusty wheelchairs or carried. Most have bandaged legs, many are amputees.

They have come from surrounding villages, from far-away regions – often from areas in the country consumed by conflict and poverty. Some patients sleep at the mosque across the street to arrive early. They are all coming to this place, known as the Mycetoma Research Centre, because they suffer from a chronic infection known as mycetoma. For these patients, the Centre’s founder Dr Ahmed Fahal and his staff are their only hope.

Most were probably infected through a simple thorn prick.

The disease

Devastating, destructive and deeply neglected

Thorns

The acacia trees dotting the dry Sudanese landscape have large thorns, strong enough to puncture the skin. The thorns probably come in contact with the causative agent of mycetoma when they fall off the tree and land in the soil. Transmission can occur when people walking barefoot step on a thorn. Other minor injuries to the hand or foot can also result in infection.

Mycetoma affects the poorest populations in the most remote areas, both men and women. Those that work or travel barefoot are the most at risk: field labourers and herders.  

There are two forms of mycetoma, a bacterial form (actinomycetoma), which is prevalent in Central and South America, and a fungal form (eumycetoma), which is mainly endemic in Africa. Treatment for the bacterial form is effective – simple antibiotics are used with cure rates of up to 90%. But for the fungal version of the disease – the focus of this website – current treatments are extremely long, toxic, ineffective, and expensive.

Mycetoma is endemic in tropical and subtropical areas of what is coined the ‘mycetoma belt’, which includes Venezuela, Chad, Ethiopia, India, Mauritania, Mexico, Senegal, Somalia, Sudan, and Yemen. Most countries are located between 30°N and 15°S. Sudan is without doubt the epicenter of the disease.

Thanks in part to more media attention – in particular a three-part series on mycetoma by the website Global Health NOW – and increasing recognition by the World Health Organization (WHO), mycetoma is slowly creeping its way into the global consciousness.

“Mycetoma patients are unique patients. Our big challenge now is to offer them a safe and affordable treatment.”

Dr Ahmed Fahal

Fungal mycetoma starts with a lesion

After the causative agent of mycetoma enters the body, the disease starts as a small lump under the skin with painless swelling. The photo above is of a boy’s foot, about one year after he stepped on an acacia thorn.

Fungal Mycetoma Lesion

Fungal Mycetoma - Infection Spreads

The infection spreads

More lesions can emerge after several years. They eventually discharge pus and spores. If caught early, the lesion may be removed surgically. Otherwise it will continue spreading to the limbs, resulting in their destruction and severe deformity.

Final stages

Without treatment or amputation, the infection can spread to other limbs, the torso and the rest of the body. It can be fatal. Secondary bacterial infections are common. At this point, even after amputations the disease can still spread.

Fungal Mycetoma -Final Stages

Because it is such a neglected disease, there are major knowledge gaps about mycetoma, including about its transmission, prevalence, route of infection, and susceptibility. The disease was only recently added to the WHO’s official list of 18 ‘neglected tropical diseases,’ after years of advocacy by mycetoma researchers and doctors to get recognition. 

A brief history of this neglect

Amasi

The face of mycetoma

Amasi mycetoma patient

“I can’t touch water so I can’t bathe – I can’t do my daily activities. I’ve been late to school. I have no crutches and I don’t own a wheelchair, which I need to borrow. It is very difficult to walk.”

Amasi, 18 years old

Amasi is 18 years old and has been infected for over a year. She lives in the village of Shadida Agabna, in Gezira State, a region south of Khartoum that is heavily affected by mycetoma.

Amasi

According to the Mycetoma Research Centre, about 20-25% of mycetoma patients are children. They often drop out of school and are unable to be among their peers. Stigma and shame force them into a life in the shadows.

Amasi in wheelchair

In Amasi’s case her peers lend a hand, push her around the village in a borrowed wheelchair, and contribute collectively for her care.

All of this because of a simple thorn prick.

The perils of care

Amputations or toxic, ineffective and expensive drugs: What patients have today

Pharmacist with mycetoma drugs

In Amasi’s village, about 4% of the population is infected with mycetoma. To the right, village elder Yousid Gaffer holds up a list of the 12 people who have had amputations – out of a village of about 700 people. Patients need to travel long distances to the nearest city Wad Medani, or further to Khartoum for surgery.

Due to the lack of safe and effective treatments for the fungal version of mycetoma, amputation is often the best (and only) chance patients have.

Village Elder Yousid Gaffer
Village Elder Yousid Gaffer shows a list of the twelve recent amputations because of mycetoma

What treatment options?

For the bacterial form of mycetoma, antibiotics (amikacin and co-trimoxazole) are given over a number of weeks and have cure rates of up to 90%. Surgery is not often needed. On the other hand, treatment for the fungal version requires the prolonged use of antifungal drugs with significantly lower cure rates.

Ketoconazole and itraconazole are the antifungal agents that are currently in use. Treatment courses can last up to a year, with repeated courses – often to no avail. These treatments have an efficacy rate of around 25-35% with a high chance of recurrence. Both have side effects. The US Food and Drug Administration (FDA) has restricted the use of ketoconazole because of concern over liver toxicity.

Another major barrier is price.

The unbearable price of treatments

Judah Mohammed Bellah is 10 years old and had travelled with his father to the Mycetoma Research Centre from the Sennar region, about six hours away. They were staying with relatives for two weeks while being treated by Dr Fahal’s staff.

A few years ago Judah was running along the river Nile and stepped on a thorn. He was infected. When his lesion became swollen, he could no longer go to school along with his seven siblings. Judah’s father stopped working to take care of him and eventually hired a rickshaw driver to take him to school.

Judah just had surgery in the city of Wad Medani and was taking ketoconazole. His father took an extra job to pay for the costs:

Treatment and rickshaw: 130 dollars a month

Dad’s monthly salary: 320 dollars a month

Almost half of Judah’s father’s monthly salary (working two jobs) go to his son’s treatment and care.

Boy with mycetoma

“The Prof”

One man’s fight against mycetoma

Thousands of patients flock to the Mycetoma Research Centre in Khartoum because its founder Dr Ahmed Fahal is their only hope. Because mycetoma is so desperately neglected, basic research on the disease and data is lacking. Most of what we know is through Dr Fahal’s eyes and his experiences at the Centre since it opened its doors in 1991.

Known as the “Prof” by his staff, Dr Fahal is a prominent Sudanese surgeon. Dr Fahal established the Mycetoma Research Centreby using his own network of personal contacts to generate funds for the project. Today, the centre is recognized globally as a world leader and authoritative source of advice on mycetoma management and research.

Almina Yusuf Hassan Balel - mycetoma patient
Dr Fahal with Mycetoma Research Centre staff

To date, the Mycetoma Research Centre has treated over 7,200 patients and operates almost exclusively on the small amounts of funding that Dr Fahal has been personally able to generate. On any given day, as many as 150 patients wait outside of the MRC for check-up appointments. Patients have travelled from villages from all over Sudan but Dr Fahal has seen patients from a number of countries, including Chad and Gulf countries.

Alsadik’s story

Nineteen years ago, while playing football on the school field, Alsadik Mohamed Musa Omer was infected with mycetoma when he pricked his foot on a thorn.

After about one year, the wound had grown into a massive sore. Alsadik was operated on for the first time. However, two years later, the disease was back and more severe than it had been before. Frustrated, he visited the Mycetoma Research Centre. By this time, the infection was at a very advanced stage. The experts at the MRC tried out a number of treatments and a total of seven surgeries, but the disease kept recurring.

“I was in excruciating pain. I had to use a lot of pain killers just to be able to walk from one point to another. At some point, I got tired and decided to have my leg amputated.“

It took him two months to convince the doctors at the MRC to amputate his leg. “All treatments were not working. The amputation has given me some peace, even though I know I am not completely cured,” he explains.

Alsadik dropped out of school after his first operation and had to stop working after his last operation. His lack of income has been difficult for his wife and five children. He has to depend on well-wishers to access treatment.

Alsadik Mohamed Musa -a patient who was amputated after having mycetoma for 19 years

A new hope?

Increased attention, potential new drugs, renewed commitment

There have been a number of promising developments in the response to mycetoma, offering a new hope for mycetoma patients.

Landmark clinical trials

The Drugs for Neglected Diseases initiative (DNDi) has recently launched a clinical trial for a promising antifungal treatment for mycetoma, in what will be the first ever double-blind clinical study for the disease. Fosravuconazole, an azole-class antifungal drug discovered by the Japanese pharmaceutical company Eisai, has shown to have strong antifungal activities against mycetoma in the laboratory.

Fosravuconazole will be investigated in a randomized controlled trial to study the efficacy of the drug compared to an existing therapy in moderate eumycetoma cases. This study is scheduled to start in 2016, and will be conducted by DNDi in collaboration with the Mycetoma Research Center.

Global advocacy

The abject neglect behind Mycetoma has inspired a new generation of young-access-to-medicine activists, desperate to put the disease on the map. Two University of Toronto students, Annie Liang and Simran Dhunna (pictured), were frustrated with the lack of attention received by mycetoma at the World Health Assembly and nominated the disease for 2015 Global Health Untold Stories Contest. They won, which led to Global Health NOW’s series on the disease.

At the World Health Assembly in 2016, Mycetoma finally got the attention it deserves on a global stage. During the 69th World Health Assembly mycetoma was added to WHO’s official list of ‘neglected tropical diseases,’ an important step in addressing the suffering of patients. Mycetoma becomes the 18th disease to be included on this list. Please read science reporter Amy Maxmen’s account on Global Health NOW about how the disease was added. 

Images:
Abraham Ali
Neil Brandvold

Partnership Mycetoma Sudan

Read, watch, share

Loading...
Davide Paparo and Ian Hausler with their thermotherapy device "CLARA"
Stories
16 Mar 2023

Cutaneous leishmaniasis: Swiss students develop innovative thermotherapy device for safer treatment of ‘flesh-eating parasite’

Stories
8 Mar 2023

Highlighting gender-based treatment gaps on International Women’s Day: Mary Alamak’s story

DNDi-GARDP Southern Africa director, Carol Ruffell (left), presents the December 2022 edition of HIV Nursing Matters and the 2022 paediatric ARV dosing chart to Bénédicte Schutz, Monaco’s Director of International Cooperation (centre), and Yordanos Pasquier, Monaco’s Deputy Director of International Cooperation (right).
News
3 Mar 2023

Working together to ensure optimal treatment for children living with HIV in South Africa

Nurse with patient
Press releases
1 Mar 2023

Fiocruz and DNDi sign strategic alliance agreement

Statements
28 Feb 2023

DNDi’s submission to the Technical Assessment component of the first Global Stocktake

Statements
22 Feb 2023

DNDi comments on the zero draft of the WHO CA+ for consideration of the Intergovernmental Negotiating Body at INB4 & 5

Hat Platform Newsletter N°22 screenshot
Publications
22 Feb 2023

HAT Platform Newsletter No. 22

Lab activities
News
20 Feb 2023

First in-person Dengue Alliance meeting brings together experts from dengue-endemic countries to develop treatments for a growing viral threat

VIEW ALL

Help neglected patients

To date, we have delivered twelve new treatments, saving millions of lives.

Our goal is to deliver 25 new treatments in our first 25 years. You can help us get there. 

GIVE NOW
DNDi - Best Science for the Most Neglected 20 Years
Facebook-f
Twitter
Instagram
Linkedin-in
Youtube
International non-profit developing safe, effective, and affordable treatments for the most neglected patients.

Learn more

  • Diseases
  • Neglected tropical diseases
  • R&D portfolio
  • Policy advocacy

Get in touch

  • Our offices
  • Contact us
  • Integrity Line

Support us

  • Donate
  • Subscribe to eNews

Work with us

  • Join research networks
  • Jobs
  • RFPs
  • Terms of Use   
  •   Acceptable Use Policy   
  •   Privacy Policy   
  •   Cookie Policy   
  •   Our policies   

  • Except for images, films and trademarks which are subject to DNDi’s Terms of Use, content on this site is licensed under a Creative Commons Attribution-NonCommercial-Share Alike 3.0 Switzerland License   
We use cookies to track our audience and improve our content. By clicking 'Accept All', you are agreeing to our use of cookies. Click on 'Customize' to accept only some cookies.
Customize
REJECT ACCEPT ALL
Manage consent

Privacy Overview

This website uses cookies to improve your experience while you navigate through the website. Out of these, the cookies that are categorized as necessary are stored on your browser as they are essential for the working of basic functionalities of the website. We also use third-party cookies that help us analyze and understand how you use this website. These cookies will be stored in your browser only with your consent. You also have the option to opt-out of these cookies. But opting out of some of these cookies may affect your browsing experience.
Necessary
Always Enabled
Necessary cookies are absolutely essential for the website to function properly. These cookies ensure basic functionalities and security features of the website, anonymously.
CookieDurationDescription
cookielawinfo-checkbox-advertisement1 yearSet by the GDPR Cookie Consent plugin, this cookie is used to record the user consent for the cookies in the "Advertisement" category .
cookielawinfo-checkbox-analytics11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Analytics".
cookielawinfo-checkbox-functional11 monthsThe cookie is set by GDPR cookie consent to record the user consent for the cookies in the category "Functional".
cookielawinfo-checkbox-necessary11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookies is used to store the user consent for the cookies in the category "Necessary".
cookielawinfo-checkbox-others11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Other.
cookielawinfo-checkbox-performance11 monthsThis cookie is set by GDPR Cookie Consent plugin. The cookie is used to store the user consent for the cookies in the category "Performance".
CookieLawInfoConsent1 yearRecords the default button state of the corresponding category & the status of CCPA. It works only in coordination with the primary cookie.
PHPSESSIDsessionThis cookie is native to PHP applications. The cookie is used to store and identify a users' unique session ID for the purpose of managing user session on the website. The cookie is a session cookies and is deleted when all the browser windows are closed.
viewed_cookie_policy11 monthsThe cookie is set by the GDPR Cookie Consent plugin and is used to store whether or not user has consented to the use of cookies. It does not store any personal data.
Functional
Functional cookies help to perform certain functionalities like sharing the content of the website on social media platforms, collect feedbacks, and other third-party features.
CookieDurationDescription
elementorneverThis cookie is used by the website's WordPress theme. It allows the website owner to implement or change the website's content in real-time.
Analytics
Analytical cookies are used to understand how visitors interact with the website. These cookies help provide information on metrics the number of visitors, bounce rate, traffic source, etc.
CookieDurationDescription
_ga2 yearsThe _ga cookie, installed by Google Analytics, calculates visitor, session and campaign data and also keeps track of site usage for the site's analytics report. The cookie stores information anonymously and assigns a randomly generated number to recognize unique visitors.
_ga_16Q5RH3XRG2 yearsThis cookie is installed by Google Analytics.
_gat_UA-10302561-11 minuteA variation of the _gat cookie set by Google Analytics and Google Tag Manager to allow website owners to track visitor behaviour and measure site performance. The pattern element in the name contains the unique identity number of the account or website it relates to.
_gid1 dayInstalled by Google Analytics, _gid cookie stores information on how visitors use a website, while also creating an analytics report of the website's performance. Some of the data that are collected include the number of visitors, their source, and the pages they visit anonymously.
_hjAbsoluteSessionInProgress30 minutesHotjar sets this cookie to detect the first pageview session of a user. This is a True/False flag set by the cookie.
_hjFirstSeen30 minutesHotjar sets this cookie to identify a new user’s first session. It stores a true/false value, indicating whether it was the first time Hotjar saw this user.
_hjIncludedInPageviewSample2 minutesHotjar sets this cookie to know whether a user is included in the data sampling defined by the site's pageview limit.
_hjIncludedInSessionSample2 minutesHotjar sets this cookie to know whether a user is included in the data sampling defined by the site's daily session limit.
_hjSession_112884430 minutesHotjar sets this cookie.
_hjSessionUser_11288441 yearHotjar sets this cookie.
CONSENT2 yearsYouTube sets this cookie via embedded youtube-videos and registers anonymous statistical data.
Targeting
Advertisement cookies are used to provide visitors with relevant ads and marketing campaigns. These cookies track visitors across websites and collect information to provide customized ads.
SAVE & ACCEPT
Powered by CookieYes Logo