Pauline Buoga gazes at a past photograph of herself and flashes a broad smile as she reminiscence the past while flipping through her catalogue of nostalgic photos in her photo album.
She flips to one of the photos in the album as she simultaneously opens the gallery in her smartphone to compare her recent photos with the past. The difference is striking and easy to see.
In the past photo, she has an enlarged breast while the second picture shows she has shed off some weight. But one thing is strikingly evident in the two photos. Her confidence, beautiful smile and a sense of satisfaction.
‘My breasts started growing when I was pretty young and there was little information about what could be the problem although I had seen my grandmother also with extremely large breasts, my mother and my sister too’-Pauline Buoga
You have to sit down and listen to her story before you can believe the grueling struggle she has endured and how she has bravely fought gigantomastia condition.
“The journey has been tough but I have managed to overcome it and wear the past with a badge of honor,” she says.
Buoga is among the women who have been suffering from gigantomastia, a rare condition that involves developing extremely large breasts due to excessive breast tissue growth.
So rare is the condition that there is hardly statistics at the Ministry of Health on its prevalence in Kenya. Experts including plastic surgeons admit little data is available on the condition. Yet, a handful of people are struggling with the condition which affects even men.
This is the case of Buoga, a survivor of the condition, who is now hoping to spread awareness about the condition that nearly robbed her of her childhood happiness and subjected her to unimaginable emotional pain from stigma.
How it all began
It all began when she was in class Four and was only ten years old. The second born in a family of four says she noticed that her breasts were enlarging and was bigger than that of her peers.
“My breasts started growing when I was pretty young and there was little information about what could be the problem although I had seen my grandmother also with extremely large breasts, my mother and my sister too,” she said.
She says it was a struggle to understand what was happening to her as her breasts continued to enlarge while none of her peers exhibited similar growth.
As the breasts grew, some of her peers started subjecting her to stigma and mocking her condition. While the large breast itself was not extremely physically painful, the pain of being subjected to public bullying worsened her condition.
“A few people had kind words for me. I always felt very bad and would struggle with self-confidence,” she says.
She said she used to get scared of sports day because every time it was sports day, they had to take off their sweaters and that was something she did not enjoy at all.
“I remember when I was in class four, there was a woman who walked up to where I was and told me that I should walk freely because I was growing into a woman and she told me that it was normal to have boobs and I should not be afraid,”she said.
Stigma
Her battle with stigma, however, only worsened after her parents opted to take her to a boarding school.
Although she was not feeling any pain, the size of her breast irritated her as she struggled with several challenges including finding the right clothes to wear.
“Although, I was not feeling too much pain, the breasts felt so heavy on me,” she says..
She says her condition pushed her to quit participating including dropping out of drama classes in an attempt to overcome stigma.
“I was really a super talented person especially in arts and music but again I was withdrawn and sometimes I would not even walk outside because I knew I would become the center of attraction,”she says..
The stigma extended even to support staff who would claim she should be in higher classes.
“When I joined Form One, cooks would claim I was a Form Four students but this did not kill my resolve to work hard and get good grades,” she explains.
And for four years in High School, she endured a mental and physical torture as peers tormented her over her condition.
Her situation, however, changed for the better when her parents opted to take her for a surgery to remove some of the excessive fat on her breasts.
“I was 23 years old at the time and they removed 3.5 kilograms of fluids,” she explains.
She also had to go for therapy which she says is important in boosting self esteem that made her to start advocacy. .
“There are a lot of things that ginantomastia did to my brain and there are a lot of things that I have to unlearn about myself and learn about myself. The therapy took me a few months,” she said.
Men not spared by the condition
But Ms Buoga is not alone. A number of patients we spoke to this writer narrated how they have had to endure stigma as they battle the condition.
For Joseph Owiti (not his real name), the excessive growth of his breasts condemned him to stigma even from his own family members. In men, however, the condition is called gynecomastia.
Although he has recovered from the condition, the father of four told this writer that there is need to educate people on how to be kind to those suffering with rare diseases.
“Even my close relatives believed I had cancer and feared it was going to burden them with the high cost of treatment for cancer. However, tests indicated that my breasts were not cancerous,” he explains.
According to him, he started developing the condition when he was an adolescent.
He believes patients with the condition require a safe and supportive environment where they can manage the condition, without being subjected to trauma.
Similarly, Buoga’s mother, Lorna Obonyo also states that parental help and comfort from friends and relatives is vital in helping patients with the condition to manage it. .
“I used to talk to her like a mother and encourage her to ignore the negative comments,”she says.
The 49-year-old encouraged mothers whose children are having the same condition not to give up on them.
Condition treatable
According to Ruth Makena Mugaa, founder of Gigantomastia Foundation and an Advocate of the High court of Kenya, she says 7.3 kgs of fluids were removed from her. As a survivor, she has committed her life to bring hope and love to those struggling with the condition.
She says the foundation that has been in existence for a decade now, is a beacon of hope for those living with the condition.
“I realised that many women were not aware that it is indeed a condition and can be addressed and treated medically here in Kenya.There was an untapped niche that had not been covered concerning women’s health and very little awareness around it,”she explains..
Through her foundation, she revealed that she has managed to assist over 500 women who had successful surgery performed on them.
“I would like to advise anyone with gigantomastia not to feel like an outcast,cursed,ashamed or lesser of a person as it is indeed a condition that can be rectified through surgery,”she notes.
Dr Martin Ajujo, a consultant Plastic, Reconstructive and Aesthetic Surgeon says the cause of gigantomastia is speculated to either be due to hormonal or drug related factors.
‘Studies have however shown that there could be an underlying genetic risk, in that, there is an increased likelihood of a daughter acquiring the condition if she has other nuclear or extended relatives with the same condition’-dr martin ajujo
According to him, evidence supporting the hormonal link is the occurrence of the disease either as juvenile (during pubertal years) or gestational (post pregnancy during the period of breast feeding) episodes that have been linked to increased hormonal factors.
He notes that the disease is not transmitted as in from an unrelated person to another unrelated person such as common flu and diarrheal diseases.
“Studies have however shown that there could be an underlying genetic risk, in that, there is an increased likelihood of a daughter acquiring the condition if she has other nuclear or extended relatives with the same condition,” he said.
He adds that men too could acquire features similar to gigantomastia such as enlarged breast tissues which could also be contributed by hormonal imbalance.
Symptomatically, he says gynecomastia (for men) might not present itself with the shoulder, neck and back pains classic of gigantomastia.
According to medical researches, the disease is quite rare with gestational gigantomastia having an incidence ranging from 1 in 28,000 to 1 in 100,000 pregnancies worldwide.
The prevalence of juvenile cases has been noted to be even lower than that of gestational gigantomastia.
He says that most of the patients that he attends to are from Nairobi county with others coming from the Western side of the country. But generally, in the world, there is little data available on the prevalence of the disease or the existing published literature, the disease has been reported to be rare worldwide.
He notes that for surgery to be done, it requires Sh550,000.
Despite the high cost of treatment, patients believe little has been done to promote awareness about the condition.
In 2022, the Ministry of Health created a Technical Working Group on Rare Disorders (TWG-RD) to help ensure that rare diseases like gigantomanstia will be given attention.
