EP 128: Ruth Makena Mugaa, Journey with Gigantomastia and Founding Gigantomastia Foundation

What if you had to live with a rare, life-altering medical condition? Ruth Makena Mugaa, an advocate of the High Court of Kenya and founder of the Gigantomastia Foundation, faced gigantomastia and founded an organization to connect people to treatment of the rare condition. Join us as Ruth shares her personal journey and more about gigantomastia.

Facebook: Ruth Makena Mugaa, Gigantomastia Foundation
Twitter: Gigantomastia Foundation

Transcript

Anne Chisa: 0:20

The Root of the Science podcast with your girl Anne with an E. If you are new here, welcome. It's always such a pleasure to have new listeners to the show If you're returning. Thank you so much. We are back. Once again, a reminder that you can listen to this podcast on Spotify, apple Podcast, google or wherever else you listen to your podcast, and remember to click the subscribe button so that you are notified when a new podcast comes on. This includes on YouTube, and remember that you can follow this podcast on Twitter, instagram and TikTok at the Root of the Sci pod, or on Facebook and LinkedIn, as well as YouTube, at the Root of the Science podcast.

Anne Chisa: 1:07

As women, it is important for us to embrace and take pride in our breasts. However, there are instances where we can become a source of immense pain and shame. Today, we are speaking with Ruth Makena Mugaa, an advocate of the High Court of Kenya and the founder of the Gigantomastia Foundation. Gigantomastia is a rare medical condition characterized by excessive breast growth, which can cause physical discomfort, emotional distress and significant challenges in your daily life. Ruth's personal experience with this condition led her to establish the Gigantomastia Foundation, a platform aimed at raising awareness, providing support and advocating for individuals affected by this condition. In this discussion, she will share her extraordinary and really inspiring journey of healing from this condition, as well as shed light on how she actively works towards helping others find healing. Tune in to all of this, and of course, so much more, let's go. Good morning Ruth. Welcome to the show. Thank you very much.

Ruth Makena Mugaa: 2:14

I'm honored to be your host today.

Anne Chisa: 2:17

It's a pleasure. Before we get things started, we've introduced you that you are an advocate at the High Court in Kenya and also the founder of this foundation. I'd like to know why an advocate of the Court of Kenya would establish a gigastomia. Yes, how did that come about?

Ruth Makena Mugaa: 2:50

Well, I was diagnosed with gigantomastia at 12 years ago, at the tender age of 25 years. So I never knew I had gigantomastia up until I met an orthopedic surgeon and I had recurrent shoulder dislocations. So when my orthopedic surgeon was fixing my shoulder on the table is when he realized that I have excessive breast tissue, excessive breast growth tissue. So that is when he referred me to a plastic surgeon here in Kenya. And, yeah, when I went and saw the plastic surgeon, he clearly diagnosed me with gigantomastia. So I went ahead 12 years ago and I had a reconstructive surgery, which is a breast reduction surgery, a reduction mammoplasty.

Ruth Makena Mugaa: 3:37

So I went on with my life as usual and had I not known that I had gigantomastia? I didn't know up until when my shoulder was fixed. That is when I sat back and asked myself a very fundamental question. I had an aha moment, Like how many more women are suffering from gantomastia and don't know what to do and they don't know that they're suffering with ? And that is when I partnered with one of the surgeons who worked on my breast reduction and I told him I think we should take this awareness of and not hire. That is when I established the Foundation.

Anne Chisa: 4:17

Amazing, amazing. You've spoken that you didn't know until you went to your orthopedic surgeon, so help us understand then. How does this condition actually affect a person's normal day to day life, and how did it get to that part where you were like, okay, I need to go and see an orthopedic surgeon?

Ruth Makena Mugaa: 4:41

Previously. As I earlier said, my shoulder used to dislocate a lot. So I had my first surgery done on my shoulder in the year 2002. Then in 2012, 2012, my shoulder dislocated again and I did. I could really not pinpoint what is the cause of my shoulder dislocating. So when I went to see the orthopedic and when he was performing my surgery on my shoulder is when I think he realized on the table that what is pulling my shoulder is the breast weight, that I had very big breasts, so ideally the master really limited me into doing very many things like I would have.

Ruth Makena Mugaa: 5:23

My most fundamental symptom here was my dislocating shoulder. Secondly, back pains. I had very bad back pains, shoulder pains, neck pains, I'm not to mention getting breast bra bras that could fit my bar size was quite an issue. So I don't know if I've answered your question holistically, but it is the breast weight that limited me to do activities like a 25 year old girl would like. Even dressing up like my peers was very hard. Even getting clothes size that could fit me was very hard. So I could be identified in a tier of even a 40 year old woman, you understand. So it also I could say like for me, probably because I have a bubbly personality. I have a strong personality. I could. I did not let it take me down personality wise or dim myself esteem. But from the 10 years I've been doing this day, ganto master, I have seen that it has robbed of so many women of their self esteem, leave alone 13 year old girls who have also come on board, and I've had the surgery to the tunes of 10 kilograms being exercised from their chest.

Anne Chisa: 6:34

Wow, that's something that, you know, one doesn't fully understand unless you've experienced this, and I think many women they don't even know, probably, that this is a symptom. This is there's a name for this symptom that they have because they I think there's just an assumption that, oh no, you just have big breasts, you know. So it's really amazing that you are putting on this awareness and you can really hear how it really affected your day to day life. So let's talk about how you got started. You said that you got together with the surgeon who helped you. So what were some of the challenges, if any, in starting this foundation in the early stages?

Ruth Makena Mugaa: 7:20

I would say that the challenges that I went through first is the mere fact that my insurance company declines to pay for the surgery, terming it as cosmetic surgery. So I'm sure in South Africa you call this medical aims. So that was my first challenge, but I would say thank God that my parents were able to come up with the amount that was needed and I had my surgery done. Secondly, the challenge, one of the major challenges that I also had, is to say and to try and similar in the stereotypes that come with Gigantomastia you because there are some people who don't understand why would you tell me I'm sick because I have big breasts. You know there's a lot.

Ruth Makena Mugaa: 8:03

There was a lot of rejection that came with it, but it came with time, with the awareness, with me making so much noise about it, so many people have warmed up to the idea that Gigantomastia actually it is an issue. There's nothing normal as to having very big breasts that are actually delivering your health, like you're having back aches, neck pains, shoulder pains and even others have got it to a point where they would think they were bewitched. So that is one of the stereotypes that the rejection that probably I got, especially from the people who are not very learned. How would I, how would I want to phrase it? Like the people who are in from very humble backgrounds, who don't understand why, as to why somebody would go into surgery to have their breasts reduced, you understand, and linking, like a condition, a medical condition, with witchcraft, you understand.

Ruth Makena Mugaa: 9:00

Also, there's a part of finding it, you finding the organization, like getting funds, because this surgery does not come cheap. That was also one of the major challenges, but with time, as a step. At a time, I got to make a lot of noise, I got to bring so many people on board, I got to involve so many county governments in the country to be able even to give us operating spaces in the public hospitals. And we took and took it. We came into another, took another step. The traction I wanted, it started getting, then attention that I was really looking out to get.

Anne Chisa: 9:37

No amazing. So you can, I think, touching on that stereotype, touching on the cultural aspects of, like you know, women are being bewitched. So how did you you said that the medical aid was an issue and to get the funding, so how the funds raised? Was it after you making the noise about the, about what you want to do, eventually your medical aid accepted, or how did that happen?

Ruth Makena Mugaa: 10:07

My medical aid did not accept to pay my for my surgery. As I said earlier, my parents had to pay off pockets. So it's it's. It's a push and shove that I'm also trying to have with the medical aids in my country to try and really understand that a woman getting a breast reduction has nothing to do with cosmetic. It is indeed a medical condition that needs to be given the attention that it deserves.

Anne Chisa: 10:34

So, how far? How far are you now, given that you've got your own foundation? Where are things you know as, as it stands, when you are advocating for the woman in your foundation to get this type of surgery, or rather, the people?

Ruth Makena Mugaa: 10:53

So actually it's been, it's been 10 years of me doing this. Every day we have cases whereby we have well wishers who come in and even pay for patients, the patients who even can get a certain amount of money to have the surgery done, if not full. So we try and accommodate these patients to come in and have the surgery done. And then, as I said earlier, even the minors from ages 13 to even 15, they do suffer from gigantumastia. So at this juncture I make, I take it upon myself to even go to the county governments and ask them to assist this young girl live alone from having the surgery done and even extending a helping hand to these girls going to school, because you can imagine, a 13 year old has dropped out of school because of these very big breasts.

Ruth Makena Mugaa: 11:40

Wow, sure no. So this, this, this stigmatization that this girl has gone through. So we also try to make sure that after surgery, where are we living the girl child? Are we just having surgery and letting the girl just go back into the village? No, we want to follow up like if this girl has finished school. We ensure that they go to secondary and also try and incorporate them to go into university. So the gigantumastia foundation does not only solely lean on the surgery, but also an empowering in the girls and to continue living a normal life like they should.

Anne Chisa: 12:16

So it's like a holistic approach from the beginning and all the way through.

Ruth Makena Mugaa: 12:21

Yes, you have hit the nail on the head. It is a holistic approach and also, let's not entirely look at Gigant or Mastia from an aspect of the women Also. Men suffer from gynaecomastia. Men suffer from male breasts, so you can imagine if a woman is feeling this way, how does a man who is developing breasts feel? So we also have a tier of men who we handle, who we come in and we have the surgeries done.

Anne Chisa: 12:53

Wow, that's true. I was going to ask if there was this was only a woman condition. But you absolutely right that the amount of stigma and shame that the men who have this condition might also have and I think that's where it also goes into take it as a holistic approach that even after the surgery, what happens to them. So, since you said that, do you work with other practitioners? You are a lawyer, right, and then you have the medical people. So in your foundation, is it, does it involve various different types of professions to achieve this holistic approach?

Ruth Makena Mugaa: 13:34

In my foundation, I would say only partnered with a plastic surgeon, because plastic surgeons are the surgeons who are best known to do this breast reduction and reconstruct the breast to achieve the best results. So I have partnered with a plastic surgeon who we come and we do the surgeries for the patients and after that we try and also work the journey with the patients who have come in to have the surgery done, from the inception of the surgery to the four weeks that they undergo the aftercare before you're given a claim bill of health. So ideally, gigantor Mastia, I as a plasma, can I have partnered with a plastic surgeon?

Anne Chisa: 14:14

And you said you've been doing this for 10 years. So to date, how many women and men have you helped so far? For 10 years.

Ruth Makena Mugaa: 14:22

It is safe to say that I have helped close to 350 patients.

Anne Chisa: 14:27

Wow, amazing Congratulations, thank you. So are there any pressing challenges that the foundation is maybe experiencing?

Ruth Makena Mugaa: 14:37

I would go back to the issue of this is something we are looking at every other day.

Anne Chisa: 14:47

And how does somebody if they, like you said that some people do assist with funding some of the patients? How can individuals partner with the organization to support the foundation?

Ruth Makena Mugaa: 15:03

We mainly have slots from our we have we have on Facebook, instagram and on Twitter, so you can just come in and drop us an email that we can take it up from there so that, no, the way you cannot limit somebody as to how they want to partner, you could have a conversation with somebody on a one on one and that we can be able to describe to them that we have cases where we probably could have a patient who is in dire need and you can come, somebody can, we can go out and say that this patient who is in need and if you like and is, you would want to come all out to assist this patient, we can engage you on a one on one and see how you can assist the patient and up to what level. Well, you understand.

Anne Chisa: 15:50

No, this is fantastic work. We will definitely put up your the information for people who would love to partner up with you. So this is specifically based in Kenya, correct?

Ruth Makena Mugaa: 16:04

Yes, this is. This is specifically based in Kenya, but over the two that the past two years I've also been having patients coming in internationally from the UK, from our neighboring countries Tanzania, Uganda, Malawi. We're having and needless to say that you're from South Africa, I'm getting an influx of so many women in your country looking out to have the surgery done. So my client call to you is that if we could also partner from the Kenya to the South African team, if we could even have a day whereby we could partner and have the surgery done for most of these ladies in your country to be assisted because I can say I have so many like as recent as being the morning I had three ladies from Huy, South Africa. I'm from South Africa, which is my client call that if you could also incorporate that, this gigantum mustier, you could make so much noise about it, even in your region for people to know that this help at a certain place that they could go and get the surgery done.

Anne Chisa: 17:11

No for sure, yes for sure, and I think more awareness is needed because, like I said, I did not even understand until after we read up about you, about this condition. So, with that being said, what is the vision that you have for the foundation? I know you've really started taking international clients, etc. But where do you see this going? But because you've really stated that there are people here in South Africa who are willing and looking for a place to get help. But if you had all the capacity, no limitations where do you see this foundation going?

Ruth Makena Mugaa: 17:54

I'm not really. I see me building my own hospital and a very prestigious state of the art hospital. I dream. You know this writer who once said dream big until your dreams shake you. So I think my dream is just about to shake me. I want to build a very big hospital whereby we can accommodate Jack and Tomas to your patients and have the surgery done day in day out.

Anne Chisa: 18:20

It's such a wonderful dream and, like you said, God willing you know from your lips to God's ears. I'm sure it will happen and, honestly, you're doing such amazing work, Ruth, and I love how you did not stay in your box because you could have just been a lawyer and going on, but clearly something was put into you and your trial really became a platform for you to help so many, so many people, and I am so excited to see what more you are going to do, because I believe that you know all of these things. Like you said, the dream is very much attainable.

Ruth Makena Mugaa: 18:58

Yes, the dream is very much attainable and, as I say, the sky is not the limit when the footprints on the moon. So I'm being very optimistic and I want to be very steadfast in continuing to blow up this noise. It's continuing to spread the word of Jack and Tomas here and I'm very grateful that and thankful that the world has spread ideally out of Kenya into East Africa. Thank you.