Ruth Makena; Disease turned my bra into a shackle

RUTH MAKENA was once ashamed of one thing that defines her as a woman, her breasts grew so big that even accomplishing a simple task as washing her clothes was hard. Four years ago, she went under the knife and had close to 8kgs let off her chest, she talks to NANJINIA WAMUSWA about a rare condition that has given her a new purpose in life.

One peaceful night in 2002 while in form two at St Georges High School in Nairobi, Ruth Makena Mugaa woke up to a painfully dislocated arm.

So painful was the arm that she was rushed to Nairobi Hospital in the middle of the night where she was injected with a strong pain killer, pethidine, to relieve the pain and later the shoulder was snapped in to its position.

"I could not tell how it came about because l was alright the whole of that day and also that evening as l went to bed," she recalls. Some doctors thought the problem was caused by a weaker shoulder ligament.

To end the problem, Makena had corrective surgery on her shoulder joint. She shares that after the surgery, everything went back to normal and she believed that the treatment was successful, and the problem fully settled.

However, it was not. In 2011, as a fourth year student at the Catholic University of Eastern Africa while pursuing law degree, the problem reoccurred. This time the condition was characterized by the uncontrollable growth of her breasts.

Makena did not feel threatened: "In my mind, l thought it was puberty because l had read it comes in several stages and equally several changes, among them enlarged breasts," says former pupil of Lang'ata West Primary and St Georges High School.

It was followed by painful shoulders, neck and the back. Makena started developing a hunchback due to breast weight.

"It seemed like overnight I moved from a size 38C to a size 42GG bra. I could not do normal duties like cooking, washing and engaging in extra-curricular activities like swimming," she shares.

She drew unwanted attention from the public because of her body weight which caused her to suffer depression and low self-esteem.

She says her colleagues, family and friends wondered what was the cause this irregular breast grown, and asked her to seek second opinion. The sole option was for Makena to undergo second surgery to strengthen the joints around her shoulder.

It was during second operation at Nairobi Hospital that the orthopedic surgeon Professor JAO  Mulimba discovered the weight and size of her breasts were the cause of her dislocating shoulder.

Breast reduction

Prof. Mulimba suggested she should consider having a breast reduction to ease the pressure on her back and shoulders.

As she sought to have her breasts reduced, Makena was diagnosed with a condition known as Gigantomastia, a rare medical condition of the breast connective tissues in which the breast weight exceeds approximately 3 per cent of the total body weight.

She reveals medical experts said that Gigantomastia could be genetic or caused by hormonal imbalances. To her mother Lucinda Mugaa, this was shock because she and her elder daughter had no such condition. Makena is the last born of four siblings-two girls and two boys.

"This was a great surprise to me as I had never imagined that my breast size would affect my shoulders or be a cause of re-current shoulder dislocations," she stated.

Makena was referred to Prof Stanley Khainga a consultant Plastic and Reconstructive surgeon at Aga khan Hospital who successfully performed the breast reduction surgery.

Makena refers to her third operation where 3.9kg from the right and 3.4kg from the left breast was removed, as a life changing experience that took approximately 7 hours.

Sadly, she had to settle her own medical bills as the insurance company declined to give her medical cover claiming this was cosmetic surgery.

After surgery and successfully healing, Makena discovered many people are suffering from the same condition. Her moment of discovery was when Makena was hosted by Radio Maisha to share her experience and others who silently lived with the same condition begun to call.

Due to public demand, Makena was invited by Radio Maisha for a second show. "On the second program l was accompanied by Dr. Ferdinand Wanjala Nangole who explained how Gigantomastia can successfully be corrected through reduction mammoplasty," she says.

At this time, people began reaching out to her, sharing similar experiences and seeking help.

Gigantomastia foundation

In August this year, Makena resigned from her job as a banker cum legal advisor at Corporative Bank where she had worked since 2013.

Through the foundation, Makena wants to create awareness on this condition and to support those suffering as most lack the information required to manage their circumstances or where they can get assistance.

She says it was a wake up call to start a foundation in which she is now working with Professor JAO Mulimba, Prof Stanley Khainga, Dr. Peter Biribwa and a panel of plastic surgeons in Nairobi.

Makena says this condition also affects men, where instead of having normal muscular chests, men start developing breasts. In men, the condition is known as Gynacomastia.

The three-month-old foundation has so far helped seven people access treatment and aftercare services. On September 2015 the foundation courtesy of Help a Child Face Tomorrow held a medical camp in Kakamega County where they conducted reduction mammoplasty surgeries on two ladies and a gentleman free of charge.

Cost of surgery

In Mombasa County, three ladies and a man underwent reduction and corrective surgery for this condition. Makena and her foundation thank Mombasa County Governor Hon. Hassan Joho who fully supported the on-going project.

She discloses, "The worst affected are people in rural areas for they are both poor and lack information."

The reduction mammoplasty for Gigantomastia/Gynacomastia requires at least Sh 500,000 for women and men more than Sh 350,000.

Although this is the beginning, Makena hopes the foundation will access and assist more people across the country and also conduct beneficial awareness campaign about these conditions.

She discloses that the main challenge is access to sufficient funds to roll out the campaigns and awareness workshops/seminars. She says that her target is to reach at least 50 patients in various rural areas in every three months.

Makena born and raised in Lang'ata, Nairobi describes herself as go-getter, outgoing, and very aggressive. To her, the support, love and comfort she received from family members helped her overcome the challenge and the stigma that comes with this type of condition.

The 29 year old single believes her past Gigantomastia condition will not affect her relationship-when it comes.

"After my surgery l now walk upright, very confident and can undertake heavy tasks without the risk of snapping my shoulder. The pain l suffered is now a distant memory. There are no side effects to the breast reduction surgery," she cheekily says.

To her, women increasing their breast size are taken as a global fad, and to many it is a luxury and perhaps reason from 2002 when she fractured shoulder, even the medical personnel she was dealing with could not point out her problem.

Possible effects of extremely enlarged breasts

Experts warn that Gigantomastia is quite common yet there is very little awareness around it.

As ladies grow towards the targeted breast development that is unique to each individual, breast growth responds differently to the normal hormones and at times they can respond excessively.

They also warn that obesity can cause this abnormal growth. The condition can also be enhanced by a pregnancy due to the hormones released in preparation for breastfeeding.

Common signs are neck, shoulder and back pains. Big breasts can also cause the backbone to fracture or bend sideways, a condition referred to as Scoliosis.

Brassier straps also dig into the shoulders causing laceration. If you pull the straps in some ladies, you will see old scars.

In some cases, where the breast sits on the abdomen, the place becomes moist causing fungal infections and has a bad odor.

Some have to sleep in a semi-sitting position, because their breasts are so heavy, they cannot lie flat.

The weight of the breasts can also exert a lot of pressure on the cardiac system and lead to heart failure. After breast reduction, patients have to undergo physiotherapy to help them resume normal posture, and to walk normally.

A female with such heavy breasts has to stay in the hospital for three to four days because the drains have to come out. This calls for comfortable recuperating rooms/wards which are not available in most public hospitals and health facilities.

When the breasts are so huge, the blood supply to the nipple is affected, therefore, surgeons perform a nipple transplant, as opposed to removing the nipple with the breast tissue.

Gigantomastia can lead to posture problems, low self-esteem, back pain and aches, respiratory and cardio-vascular problems, shoulder and neck pain, it impedes normal activities, such as athletics and exercise making one prone to heart diseases and obesity. Besides, a woman with heavy breasts can easily fracture her spine.