Wellness Tailors

We target rare and chronic skin conditions, primarily lymphoedema and elephantiasis, but also burn sequelae and neurofibromatosis. 

Lymphoedema and elephantiasis are two chronic complications of lymphatic filariasis (LF) mainly, and to a less extent, consequences of podoconiosis. LF is a parasitic disease caused by mosquitoes, affecting over 120 million people in 72 countries throughout the tropics and sub-tropics of Asia, Africa, the Western Pacific, and parts of the Caribbean and South America. Podioconiosis is a type of tropical lymphoedema clinically distinguished from LF through being ascending and commonly bilateral but asymmetric. Podoconiosis is found in highland areas of tropical Africa, Central America, and north-west India. It affects about 1.5 million people; men and women are equally affected in most communities. It is worth noting that cancer cure and some cardiovascular disorders could lead to lymphoedema. Lymphoedema and elephantiasis are disfiguring and permanently disabling conditions with a significant social and economic impact; they are diseases of poverty affecting vulnerable people. Lymphoedema is a severe swelling of the limb(s) that could progress to deformity and disfigurement as it reaches the stage of elephantiasis in the lower limbs. The genital parts including the scrotum could be significantly enlarged by lymphatic fluids. The limb could end up in enormous size and volume, resembling an elephant foot, thus the analogy and the condition's name. The skin becomes thick, rough, and sometimes presents cracks and lesions. Lymphoedema and elephantiasis patients have reduced mobility and are often bedridden; some end up confined in their houses. Living and sleeping conditions and carrying out normal daily activities may become difficult and uncomfortable. Lymphoedema and its more advanced form, elephantiasis, occur primarily in the lower limbs and are commoner in women.  People with severe lymphoedema or elephantiasis cannot wear regular clothes and normal shoes because of the massive size of the limbs; therefore, special and adapted outfits and shoes became indispensable.  

In Burkina Faso, a country in West Africa, there are 14,580 people with lymphoedema (Ministry of Health 2019). About 712 patients have been trained in self-care – basically for washing, exercising, and caring for their affected limbs. Besides the clinical care, which uses compression bandages primarily, the management of this condition should be supportive and focused on improving the patient's physical appearance and quality of life. In addition, suitable outfits and footwear are critical and should be worn to protect the skin.

Burns constitute one of the most common clinical conditions worldwide affecting primarily children. One out of five children suffers from accidental but avoidable burns worldwide annually. Most patients with sequelae in developing countries could not afford proper and expensive surgical reconstruction to regain acceptable mobility or articulations functions, and many could not afford cosmetic surgery or care, especially in a low-income country like Burkina Faso 

Neurofibromatosis is a rare genetic disorder with neurological and cutaneous manifestations, causing benign tumors of the nerves and growths in other parts of the body, including the skin. Some people with this disorder have barely noticeable neurological problems, while others are affected profoundly. The incidence in the United States is about 200 000 cases per year. The incidence in tropical countries is unknown, but one or two cases are suspected every year in clinical practice in Burkina Faso. There is no known prevention or cure for neurofibromatosis.

The disability and disfigurement due lymphoedema, elephantiasis, burn sequelae, and neurofibromatosis often means patients must stop working or change to less productive jobs. The medical conditions also exert a heavy social burden on patients, as chronic complications are often considered shameful and prevent patients from playing their role in society and leading fulfilling emotional life. The severe disability caused by these conditions could lead to physical limitations and social stigmatization for men. For women with lymphoedema, shame and taboo are associated with the conditions, especially lymphoedema and elephantiasis. When their lower limbs and genital parts are enlarged, they are severely stigmatized; marriage, in many situations an essential source of security, is often impossible. These individuals may be prone to depression and poor mental health. Chronic skin conditions usually affect not the patient and the family, especially if the patient is the primary income earner. In most cases, the patient is unable to move out of her/his house, has reduced mobility, lives in a remote area, and cannot afford transportation costs to go to a tailor's shop.

Our solution is to fill the gap between the doctor and the shoe and clothing stores. We listen to the patient's frustrations about clothes, shoes, furniture, and immobility;  then, we offer personalized solutions using mobile technology, medical knowledge, and tailoring expertise. 

We are establishing a remote body size measurement using smartphone apps and a teleconsultation system to evaluate patients' skin conditions, limb sizes and parameters, and living and sleeping conditions remotely and comprehensively. Then, we design and provide customized and special clothes, footwear, and mattresses/sofas to accommodate medical and living conditions. The initiative will use medical expertise, videoconferencing, photo analysis, adaption, and monitoring procedures to fast-track the delivery of the personalized items. The initiative includes four articulated components: 

 a) utilization of smartphone apps, teleconsultation, and video teleconference to remotely assess the patient's needs, size, and clinical specificities, including skin conditions. During the consultation, we bio-mechanically evaluate the patient feet and limbs, as well as the therapeutic needs and living conditions. The patient's size, limb measurements, and photos could be taken by the caregiver using a measurement tape and a regular cellphone camera. The data are transferred by WhatsApp. If a smartphone is available at the patient's location, it will use an app to take photos, do body measurements, and process and transfer the data on the spot. Then, we will discuss with the patient and the caregiver via teleconsultation (with a regular cellphone) or videoconference (via smartphone) to assess the medical condition and the needs for outfits, footwear, and or furniture. All the data collected are ultimately transmitted through secure messaging to the design unit.

b) Set up a computer-assisted design unit to analyze the data, design, and develop samples. Clothing and footwear are part of the patient's attire and reflect her or his self-image. Therefore, compromises sometimes must be made to find the perfect balance between what looks good and what feels good, in terms of social appearance. The samples are produced according to the patient’s needs and shipped to the patient.

c) establishing local production of suitable footwear, outfits, and special furniture aiming at achieving sustainability, given the high cost of customized items and the poverty of most patients. The production line/unit uses the instructions from the design unit and local materials. For example, ready-made shoes can be modified to make them wider and more accommodating. It is most easily done with sandals by lengthening straps, but shoes can also be cut and split through the bottom to make them wide. Once the patient tries out the sample and is satisfied, the final outfits/shoes and furniture are produced. The production line uses local contractors to produce the final customized clothes, personalized footwear, particular sofas, mattresses, other furniture, and accessories. In the long run, the initiative aims to train, equip and employ some patients to produce the customized items. It is expected that these patients will be able to make money and ultimately become economically independent.

 d) rolling out monitoring, learning, and adaptation service to continuously follow up with the patient’s needs through regular remote videoconferencing or WhatsApp communication. The service will use indicators, including the level of comfort and patient satisfaction. A network of external medical advisors and experts including orthopedists, podiatrists, and dermatologists will be available in circumstances when additional expertise is needed.  Ultimately, the customized outfits will facilitate mobility, allow patients to gain confidence and self-esteem, have a decent social life, and contribute to their social reinsertion and rehabilitation.

Lymphoedema, elephantiasis, burn sequelae and neurofibromatosis usually lead to permanent, long-term disability and stigmatization; they also often cause disfigurement, with severe social and economic consequences. Indirect losses due to diminished productivity are also a severe drain on local and national economies. Besides the clinical manifestations, the psychological and mental impact of the disease has a terrible effect on the patients and often leads to social exclusion. The patients with these conditions are primarily poor people in remote areas in developing countries. These conditions affect not only patients' health but also their living and sleeping conditions, physical appearance, and social life. It is a disability that carries physical stress and an emotional burden on the patients as they struggle to live everyday life and interact with their families, friends, and acquaintances. 

The lack of adapted clothes, shoes, or mattress worsens the patients' s difficult living and sleeping conditions. Their isolation, lack of self-esteem, and the stigma they suffer from could lead to mental illnesses. Special, tailored, or customized clothes, bed sofas, or mattresses are difficult to acquire locally in Burkina Faso because there are no specialized tailoring services to produce outfits or footwear to adapt to these medical conditions. Patients with elephantiasis, for example, need customized shoes that allow them to move around. Custom-made footwear will accommodate nearly any size foot, and effort will be always made to obscure the size discrepancy as much as possible. Sandals with adjustable straps or lacing will also accommodate a good bit of swelling, and simple stretching is also effective as a first inexpensive resort. For severely obese and bedridden elephantiasis patients, our medical tailoring service will design adjustable, multilayers, detachable and foldable mattresses and sofas with smooth and washable surfaces to avoid bedsores and pressure wounds. Such devices will be adapted to the patient's size and skin conditions and facilitate bed exercises, bed baths, and other hygiene measures for patients with little mobility. Likewise, for patients with extensive burn sequelae and neurofibromatosis, we will design and produce customized outfits with smooth and non-irritable fabrics that cover most of the patient’s body, allowing not only for discretion but also for proper care, hygiene, and skin protection.

We are a multidisciplinary team including an expert in lymphoedema and elephantiasis, an information technology specialist, a computer science expert, a public health professional, a social worker, and a tailor-upholsterer. The team lead has over 20 years of experience providing care and support to lymphoedema and elephantiasis patients, but also to people with other chronic skin conditions. He has worked in more than 12 countries in Africa for the past ten years, especially in remote districts affected by lymphatic filariasis. The information technology expert is an award winner for technological innovations in 2018, and the computer scientist has worked as an engineer for Microsoft and has earned several awards for technical innovations. The team is made of Africans, culturally close to the people targeted by the initiative. The team is knowledgeable about tropical health, diseases of poverty, and issues surrounding the stigma and marginalization of people in developing countries. The deep understanding of the socio-cultural and economic environment of the beneficiaries has been instrumental in the generation of the initiative. In the same vein, the team will be able to implement the activities smoothly and have a significant and positive impact on the patients' lives.

We have medical and technical expertise in the field of lymphoedema, elephantiasis, and other chronic skin conditions. We have experience providing care and support and social support to vulnerable people in developing countries. In addition, we have a tailor-upholsterer with extensive experience (over 20 years) producing outfits special mattresses, and sofas. He is a critical asset to the initiative and would like to use his expertise to significantly impact the lives of the affected people. The team members are professionals who have lived and worked in developing countries, especially in Burkina Faso (where most of them are originally from) and where the initiative will be implemented. The team members are passionate and motivated about providing social and medical support to patients. The team members are knowledgeable of the country's socio-economic context and culture and are eager to give back to their home country and assist the people suffering from terrible disabling diseases.

Costs may be a limiting factor to bringing the services to most patients who could not afford customized furniture, for example. We will collaborate with non-governmental organizations that support vulnerable people and health insurance providers and get our services subsidized, and affordable. We aim to produce more affordable outfits, footwear, and accessories as our initiative scales up and reaches economy of scale through mass production.

The management of lymphoedema and hydrocele is limited to self-care, exercises, and other hygiene measures. Compression stockings are commonly used to control swelling and reduce stresses on the stretched tissues. Patients can control or prevent acute infections using antibiotics, and by washing limbs with water and soap. The social and psychological effects of lymphatic filariasis have been poorly recognized. Social support and socioeconomic rehabilitation are necessary to complement the medical care of patients so that they can achieve full integration into their community by overcoming the psychological consequences of stigma and shame. The impairments and disability associated with lymphoedema and elephantiasis often lead to the inability to work. These patients need assistance in finding suitable jobs or income-generating activities, which could only be possible if they can get decent outfits and comfortable shoes.  Fulfilling these social needs, however, are often outside the remit of clinicians and health counselors. Traditionally, people suffering from chronic skin and other body deformities get social support from relatives, families, and other caregivers.  There is no way to accommodate the patient's medical condition with special furniture, and there is no specific or organized service to assess the patient's needs and develop personalized clothes and shoes comprehensively and remotely. Likewise, there is no specialized unit to fabricate furniture adapted to the medical condition of bedridden patients, patients with skin irritation, and all those who could not be accommodated to regular mattresses, sofas, etc.  Setting up a social support and rehabilitation system, including access to customized shoes, clothes, and furniture depends on the human and financial resources available.

To bring comfort relief and improve the lives of patients with special needs, it is critical to develop and implement streamlined, data-driven and adapted procedures for people with limited mobility. We are therefore establishing a structured platform using mobile technology to scientifically, and technically assess the patients living and sleeping conditions remotely and comprehensively, as well as their needs for special clothes, shoes, and adapted furniture. For most patients who live in remote areas, with limited mobility, or are bedridden, we will use smartphone photo apps and teleconsultation to remotely collect and analyze body measurements and special needs. Then, using computer software, we will design in real-time, special outfits and furniture accommodating specific or special medical conditions. The standardization of the operations, including the evaluation, review, analysis, production, monitoring, learning, and adaptation procedures, and the introduction of a fast-manufacturing service for rapid scale-up and allow for mass production and exportation in the long run. In the short to long run, to achieve sustainability, ensure beneficiaries' self-sufficiency, and self-reliance, we will empower, train, and equip some patients to have their own small tailoring shops (for shoes and clothes making) and contribute to the expansion of the initiative. It is anticipated that our standard operating procedures could be replicated in many settings and countries.

In the short term (next year) we aim to reach 4 000 people needing special outfits, shoes, or furniture due to their medical conditions. We will provide personalized mattresses, sofas, and clothes to improve the well-being of marginalized individuals. We plan to receive at least 98% consumer satisfaction in the first year of operations. In the following two years, procurement and manufacturing procedures will be progressively reinforced and expanded to augment the volume of production. The teleconsultation will reach up to 14 000 people in the 5th year. The initiative is expected to significantly contribute to social inclusion and to fighting against inequities. In the long run, the initiative would profoundly transform people's lives by contributing to alleviating poverty. We aim to expand to other LF endemic countries in West Africa by transferring our knowledge and replicating our solution. We will ultimately reach around 128,000 patients, who will regain a good level of mobility and undertake income-generating activities, be self-reliant, and economically independent. 

We will measure our progress in the provision of tailored outfits by using the following indicators:

1. The number of enrolled patients. The enrolled patients will be included in our database and monitored every month.

2. The number of items produced by category - shoes, clothes, sofas, and mattresses. The number of products manufactured will reflect the quality of the items delivered, the dynamism of the production line, and the level of effort and activities that go into the research, design, and development of special items. This indicator will be measured quarterly.

3. The number of patients satisfied by the initiative. Our goal is to ultimately get the patient's satisfaction, who will regain self-confidence and a decent social life. We will use questionnaires and interviews to collect and analyze the data quarterly. 

4. The percentage of items that have been returned or unused because they are unsatisfactory, are unfit, uncomfortable, or have imperfections. The return rates will be assessed monthly. We will follow up with the beneficiaries to understand the issue and propose alternatives, replacements, and or refunds.

5. Caregivers and families' satisfaction. We will assess and track reviews and opinions of caregivers and families by using phone calls, interviews, or questionnaires to collect the data. We will critically learn and adapt our strategies and processes based on the reviews that we will collect monthly. The team will constantly review and make the necessary adjustments indispensable to gain trust and reputation.  

Our vision is to have a patient with a chronic skin condition happy and enjoying life because she or he is appropriately clothed, wears comfortable shoes, can show up in public, do her/his errands, and undertakes income-generating activities to earn a living. She or he will possess a unique mattress and a sofa adapted to her or his medical condition. Our long-term outcome is patient satisfaction, which encompasses mainly comfort, emotions, well-being, and self-esteem. The immediate output that we will achieve through this initiative is to have adapted and customized outfits and accessories that are data-driven and consider the culture and social environment of the patient. We will use teleconsultation, high-tech design, and standardized manufacturing procedures as processes to gain traction and speed up customized product delivery. We are bringing technology and medical expertise as critical inputs to achieve our goals.  

We are integrating an algorithm that includes a database of photos and characteristics of skin lesions related to LF and podioconiosis complications, burn sequelae, neurofibromatosis, and a list of fabrics that could accommodate these conditions. If a smartphone is available at the patient's location, then measurement could be taken using an app (example Tape Measure AR). Otherwise, photos taken from various angles with a regular cellphone camera, and the physical measures (using a measurement tape) will be transferred via WhatsApp to the design unit for processing. Ultimately, the process will yield accurate measurements of the limbs and other body parts. The patient's preferences and special needs will be discussed with the patient or the caregiver through video conference or teleconsultation via regular cellphone in the absence of a smartphone. The design software running the algorithm will analyze the teleconsultation results and the specific body measurements from the smartphone photo apps.The aggregated data are transmitted through secured SMS to the design unit (the design unit is composed of the tailor, the LF medical expert, the public health expert, the IT professional, and the computer scientist) and analyzed altogether using the design software to produce a soft-copy sample of the desired item. Likewise, mattresses and sofas will be generated using the same procedures e,g measurements by photo apps, analysis, and teleconference to design 3-D prototypes and finally send them to the production unit.

We are a team of six professionals (5 men and one woman) from different origins, religions, and ethnicity. Our team includes a female social worker in charge of social inclusion and diversity. She brings the necessary expertise to the initiative and will reach out to female and male patients from various backgrounds, ethnicities, religions, and races. As we will be scaling up, we will hire three other female workers to help roll out the initiative. Our initiative encompasses all the social and cultural differences we have in the targeted people. As clinicians, social and health professionals, and social entrepreneurs, we treat individuals with equity, and high consideration and accommodate the patients' social needs and cultural sensibilities.  

We are establishing a service to assist underserved individuals using push and on-demand approaches to help people with special medical conditions get proper and adapted shoes, clothes, and furniture. Although people are most often referred by a physician, many will come to us through word-of-mouth or by finding us on the news, in advertisements, flyers, and in other information displays. The needs of the patients will also be systematically identified by our network of health providers, clinicians, and social workers, using every single opportunity of contact with potential beneficiaries (push approach). It is also anticipated that several patients and caregivers will come forward on their own requesting our services as information about the initiative becomes widely disseminated. We will undertake an evaluation and provide financial estimates to sponsors, care providers, or patients. Once the orders are placed, our teams will proceed with the remote evaluation and measurements, teleconsultation, design, and production. For shoe wear, for example, we offer creative solutions to footwear-related problems ranging from inexpensive shoe modifications or inserts to designing custom-made shoes and boots from scratch.

The production of items will be executed in the first year by subcontractors; later we will establish a production line made of patients/beneficiaries who will be trained and equipped to produce the items. As the initiative gains popularity and a good reputation, We will use social marketing, advocacy, and fundraising efforts to attract donors, insurance providers, non-governmental organizations, hospitals, and government funding agencies to help sustain and increase the production.

We will introduce, stimulate, and empower local production of suitable footwear, outfits, and special furniture to achieve sustainability of the initiative, given the high cost of customized items and the poverty of most patients. We will train some of the patients (who are physically fit for tailoring activities) in the production of shoes, specialized furniture, and outfits, and we will provide them with sewing equipment and tools to establish small shops, and enable them to contribute to the production unit and earn money. These patients will ultimately be self-reliant, self-sufficient, and achieve social reinsertion. The financial profits will be reinvested in procuring raw materials and sewing equipment, subcontracts, staff salaries, fundraising efforts, advocacy activities, and marketing. Furthermore, we will develop relationships with home care providers, and social services to promote our services and get contracts. We plan to get support and funds from grants, donations, and agreements with government and public institutions (hospitals and health services). We will target healthcare structures in remote settings of the country to showcase our initiative and raise capital to maintain the staff's equipment and payroll. In many countries, there is an integration of morbidity management and disability prevention (MMDP) in the universal health coverage (UHC) mechanism, which offers an opportunity to sustain the initiative in the long run, as public funding will be made available to provide care and support to patients with rare chronic diseases.  

Our solution is at the concept stage. So far three organizations: Research Innovation and development for health (RID4H), ATLAS Network, and Association CASE have pledged $4000 each as financial contributions to the initiative. We have started advocacy and resource mobilization activities, and we are currently in negotiation with nongovernmental organizations like Handicap International and American Leprosy Mission (which have interventions in the field of LF morbidity management and disability prevention in West Africa), and other institutions working in the field of foot care disability management.