What inspired you to start this organisation and when was it started?
I had a passion to help girls and women with a similar condition that affected me. I suffered from gigantomastia, a rare medical condition that affects the breast connective tissues. It is quite common, yet there is little awareness around it. The organisation began in the year 2015.
What is gigantomastia and how can one know that they have the condition?
The indication that one has the disease is that your breast weight exceeds approximately three per cent of the total body weight. There are varying definitions of what is considered to be excessive breast tissue; that is the expected breast tissue plus extraordinary breast tissue, ranging from as little as 0.6 kilogrammes up to 2.5 kilogrammes. The enlargement can cause muscular discomfort and overstretching of the skin envelope, which can lead in some cases to ulceration.
Many people think having big breasts is fashionable. When does it become a problem?
Technically, gigantomastia continues to receive scant attention in Kenya. Women increasing their breast size is taken as a global fad, reducing the breast size is to many a luxury and perhaps that is why from 2002 when I fractured my shoulder, even the medical personnel I was dealing with could not point out what my main problem was. International donors and regional medical institutions have focused medical aid on communicable diseases such as malaria, TB and HIV/Aids, leaving those suffering from rare diseases to fend for themselves.
Share with us your experience with the condition.
Well, I was a healthy girl with lots of friends. But my situation took an alarming turn when my breasts began growing bigger than my age mates and even my female teachers. I became the centre of focus. Some would look at me positively while others would question why my breasts were bigger than others. So, I had to seek for help. It took me long to realise that I had a breast abnormality. Earlier in 2002, I dislocated my arm and I underwent surgery to fix my shoulder joint.
When were you diagnosed with the condition?
In 2010 at 24 years of age and pursuing my fourth year law degree at the Catholic University of Eastern Africa, my breasts were growing uncontrollably. It seemed like overnight I moved from a size 38C to a size 42GG. As my breasts continued to grow, my shoulders bore the burden, so I had a second surgery to strengthen the joints around my shoulder. The orthopaedic surgeon, professor JAO Mulimba, pointed out that my breast size was the cause of my dislocating shoulder and I should consider having a breast reduction surgery. He, therefore, referred me to Professor Stanley O Khainga, a reconstructive plastic surgeon at the Aga Khan Hospital who diagnosed me with gigantomastia. He recommended that I have a breast reduction. In 2011 I underwent constructive surgery at Nairobi South Hospital, which took approximately four hours at a cost of Sh500,000. It totally changed my life after having a total of 7.3kgs removed.
What is the statistic for the number of women with the condition?
I could say that one in every 10 women suffers from gigantomastia.
How many women has your organisation assisted so far?
I have helped women and girls around the country. The mainstream media has identified some for us while others find us through social media. Recently we are also getting requests from women in our neighbouring countries such as Uganda, Tanzania and as far as South Africa and West Africa. With the partnership of County governments of Mombasa, Kilifi, Kisumu, Meru, Kakamega, Kiambu, Machakos and Makueni we have been able to restore the hope of young women and remove the burden of heavy breasts and pain for old women. So far, I have assisted 60 women. Close to 100 women are on my waiting list as more and more women are coming on board.
What are some of the challenges you face?
The reconstructive surgery is expensive and most of the women suffering from this condition cannot afford it. Publicity of the activities of the organisation is minimal and we are not able to reach out to women suffering in remote villages. Insurance companies do not undertake the procedure as they term it as cosmetic surgery. This is not the case because when symptoms such as severe backaches, ulcerations, dislocation of shoulders arise as a result of the weight, it becomes a medical emergency.