Unveiling the Zebra: A Raw Journey Through Rare Disease and Resilience — A Patient Story of Brandy Giovanni Robinson (Rare Disease Month Testimonial)

In support of Rare Disease month, I am providing my patient story in a raw, no hard editing, and authentic narrative. We are called zebras (people with rare diseases). I normally do not share my personal life publicly; but for Rare Disease month, I am sharing to inspire other zebras (people with rare diseases) and spread awareness of rare diseases. Originally, I had a video posted on my YouTube channel but for some reason, YouTube deleted my account. So, I reposted it elsewhere including on my website at https://www.brandyrobinson.com and on Vimeo (click the link). I made the video public domain so you can repost and reshare.

Here’s my patient story …..

In February 2021, I was diagnosed as having prolactinoma. It is a pituitary gland tumor, a type of brain tumor. How I discovered this was something interesting. In Spring 2019, I got e-coli after eating some bad shrimp. The doctor gave me some medication for the e-coli. Weeks later, my menstrual cycle started getting lighter and lighter. I told the doctor about my menstruation after taking the medication. However, the doctor told me to change my diet and lose weight, especially since I had gained weight unexplainably. On this advice, I signed up for a weight loss program. Yet, nothing changed. My menstrual cycles become lighter and lighter until there was no more visible signs of a menstrual cycle every month.

By the time the pandemic hit, I had no sign of a menstrual cycle. I could not go into my gyno because the world was shut down to face to face interactions. Once the world opened back up, I scheduled an appointment with my gyno. He performed challenge tests to start my menstrual cycle. That did not work. He ordered blood work and found the prolactin hormone was very high. My numbers were in the 200s, which he told me that the prolactin hormone should be in the 20s, so I was 10x higher than the normal range.

My gyno then told me he wanted to check something else, and to not worry, it is probably really nothing. So, he ordered a MRI. I was so freaking nervous about this MRI since this was not something you do everyday and I had no idea with this or what to expect despite my gyno explaining this. [There was this process with and without contrast dye, which is very important for the doctor and medical professionals viewing the MRI scans.]

Well, hours after the MRI, my gyno called me to schedule an office visit to discuss. It was almost immediately we discussed the MRI. He informed me I had prolactinoma. Out of his 30 close to 40 years in practice, he only had one other patient with this condition and it was a rare condition, which had no cure. He said that it is manageable through medication. But even if it is under control or the tumor is removed or shrinks, it could come back. He would then to refer me to an endocrinologist.

Before I could ask him how or why this condition occurred, he asked me questions regarding my family history and medication history. There was no one in my family with this condition. I learned from my gyno that medication I took in 2009 was possibly linked to prolactinoma. He asked how I got on this particular medication and I was a bit hesitant at first to disclose it. But, he was curious.

I explained to him that in 2009 I was targeted on a large scale. When I told others I was being targeted and the life threatening things that was occurring, no one believed me. Instead, I was hospitalized against my will as some people thought I was mentally ill. I was forced to take medication.

These medications had major side effects and no one believed me about the side effects. Again, instead I was given more medication for the side effects. Months later, I was taken off those medications after one doctor believed me and found I should have not even been there and on the medications.

[I know what some of you are thinking. That this is untrue and unreal. However, due to national security information, I cannot disclose the specific details unless I am ordered to do so. I can only give high level, general details. With that said, fast forward, in 2011, the targeting came to a head. There was now direct evidence of the lies spread about me and the targeting that was occurring. Despite this direct evidence, the people who knew about the evidence and the extent of the targeting, did not inform authorities (and some tried blocking this information from getting to the top and to the right people). I am not sure if they were either scared, afraid they will go to jail, lose their professional licenses or lose their security clearances for what they have done and participated in, or ashamed as to what they have done to me.

For some people, they thought they knew my story. So, they treated me badly, under the impression of these lies they were told about me. Needless to say, I was and have been treated so awful during those times of the targeting. The ones who eventually found out the truth about my story and the lies spread about me eventually apologized to me for their behavior and were ashamed of themselves.

Some people caught wind to my targeting and I became an underground legend of sorts. In 2014, I wrote a fictional novel on my experience called Bernice Rathe, per my therapist’s suggestion to journal to better process those rare, traumatic life events. Life moved on for me and no justice and no compensation was provided for what was done to me. By 2017, I was invited to do a TEDx talk on my life experiences. At the time, I was unaware I had a brain tumor. It was not until my gyno discovered this in 2021. I am grateful he was knowledgeable and researched this condition because I now know the prolactinoma is possibly linked to my targeting in 2009.]

After the diagnosis in February 2021, I scheduled my appointment with my endo. It took nearly 3 to 4 months. In the meantime, I researched the condition. There was no cure but there were hopeful studies. I followed the studies’ interventions and started to incorporate things I could do such as increasing my vitamin E and family of B vitamin intake. I continued my weight loss program journey as well.

There were one of two medications that I would possibly prescribed. So I researched these too. Studies showed that there were contraindications for people with heart issues or heart conditions since the meds could worsen those conditions. Therefore the medications would not be recommended. Like the researcher in me, I went to a heart specialist to get screened and scanned for any heart issues.

At first my heart specialist did not understand why I was coming for these things if I had no chief complaints. Then I explained to her the recent diagnosis of prolactinoma and the contraindications. Then it made a world of sense to her. After the heart scans and screening, my heart specialist gave me the green light. She even said I had a strong and healthy heart.

By May/June 2021, in my initial appointment with my endo, I weighed 52 lbs. less, I continued my vitamin intake, and I was equipped with my heart scans. I also tried lowering my stress levels, since stress does not help my condition.

My endo was impressed since the bloodwork she ran showed I had lowered by prolactin by 70 points and lost 52 lbs. Also I had already done the leg work in terms of the heart scans so I was basically ahead of the curve.

My endo prescribed the medication as this was necessary to assist me in shrinking the tumor, lowering my prolactin and jumpstarting my menstrual cycle again. With the aid of the medication, my prolactin levels started to slowly but steadily decrease. I got my menstrual cycles back but I still had the headaches from the prolactinoma. The headaches and vision issues were the worst during my menstruation. However, the prolactin levels almost decreased close to the range of 20s.

Where I am today with my condition?

By late 2022, I was diagnosed as severely anemic, as the prolactinoma induced anemia.

My anemia was so bad that I needed a blood transfusion. My endo urged me to get into a hematologist as soon as possible. I got into an appointment whoever was the quickest. The hematologist’s advice was that a blood transfusion was the best approach and needed approach but it would take longer with blood compatibility, especially being that I had a sickle cell trait. From my labs, I needed something now and iron infusions were quicker. So I immediately began the iron infusions.

The iron infusions were improving my anemic condition but it was not enough. I switched doctors after my initial set of iron infusion treatments to a doctor and hospital system that was ranked top in the world. This new hematologist was very good. She explained the entire process and what levels of iron infusions I should be given.

After her round of iron infusions, she improved my hemoglobin level close to the ideal level. Yet I still needed to take iron supplements to maintain this level of health performance and expectation, which is something I was accustomed to since I have taken iron supplements most of my life due to my sickle cell trait.

In the latter part of 2023, my endo ended up leaving her practice and going into a different field. So I transitioned to a new endo. From recent labs this year (2024), my prolactin levels were increasing, as it indicated the hormones were not responding to the current dosage. My endo did not play with this! She ordered my dosage to be increased 3x the current dosage. So I was now taking a triple dosage.

At first my body went through some major adjustments where it was a feeling I never felt before. The headaches were worse than the hammering headaches I felt during my menstruation due to the prolactinoma. However, I was grateful my body and the medications finally adjusted.

Reflection

This experience I had me reflect upon my life as to make sense of all of this. I have had a storied life. It has been and is fun and interesting to say the least, despite the ‘crazy’ life situations that occurred. I am not boasting or being on my high horse. This journey had me reflect recently on how far I have come and the achievements I have made. Let’s list them.

1. A child prodigy in music at 12 (learning and mastering 6 different instruments, self-taught and eventually invited to major ensembles conducted by and classically trained by world renown musicians).
2. Graduating early from high school at age 17.
3. Getting a full music scholarship to Jackson State University and graduating early from college at 20.
4. Teaching high school at age 20, while pursuing my Master’s in History.
5. Going to law school, graduating and becoming one of the youngest in a prosecutorial role at age 25 at that time (I am sure there are younger people now in those roles especially since the internet has provided additional avenues to speed up education and obtain dual degrees; however, I did not have the assistance of internet learning and dual degree programs when I went to law school).
6. I became an adjunct professor at age 25, teaching and lecturing on subjects from English Composition to Law at a variety of colleges and universities around the U.S., becoming very successful at it both in person and online teaching and lecturing; I was awarded 3 Excellence in Teaching awards from 2008 to 2010 (consecutively each year) by then existing Ashford University; my role elevated to Associate Professor-Lecturer.
7. By 33, I purchased and managed rental properties as investments. By age 35 (and I do not recall my specific age but I could have been younger), I was a licensed managing real estate broker.
8. Becoming a United Nations Delegate for WILPF-US; I met world leaders, advocates, activists, and other famous and notable people during my time serving in that capacity who provided great guidance and advice; then later I becoming one of WILPF’s Co-Presidents of a local chapter/branch.
9. Constantly reinvented myself where I achieved 5 degrees and became a scholar in a variety of areas and topics: BA in Political Science from Jackson State University, MA in History from Jackson State University, MBA (International Business & Marketing) from Northeastern University, JD from Thomas M. Cooley Law School, and LLM (Transnational Law) from Willamette University College of Law.
10. Becoming a scholar: Publishing scholarly articles, some of which are in major publications on subjects ranging from consumer law, minority rights, IP (intellectual property), to terrorism.
11. Becoming an author: Publishing my life story into a fictional novel (Bernice Rathe) and even creating a comic book series (Bernice Rathe the Comic Book Series); I also developed a children’s book series (Ebony and Ella) on how to talk to children about difficult topics.
12. I taught myself to code and created two Android apps: one was a safety app and another was a health and wellness app.
13. Doing a TEDx talk on my life story.
14. I was an assistant producer of a reality TV series. [Fun fact: In 1998–1999, I was also an extra in the movie, A Lesson Before Dying. One of the famous movies Don Cheadle is known for and a movie that had actresses and actors like Cicely Tyson and Mekhi Phifer. In the first few seconds of the movie, I was the girl in the white dress walking with groceries from a store, while a car drove by very quickly. You can barely see me but I was there for the first few days. A part of the movie was filmed in my little bayou town in Louisiana.].
15. VP of Regulatory Affairs and Compliance in Biotech: I pivoted into biotech and the medical device industry and quickly and successfully became a VP in biotech within a matter of 3–4 years; I did not realize it at the time, but I was one of few women and especially as a woman of color and queer in biotech as an executive.

Knowing all of these accomplishments (and some say genius and even before my time since I have done things few queer women of color have done, but I do not view myself or the things I have accomplished in that manner), I needed to know what I needed to do with these experiences in my life, some of which were so unique no one believed me. Then I realized the connection between all of this and one of my purposes, which is to show others you can achieve greatness, you can do great things, you are worthy, despite challenges and no one believing you or supporting you — and to use my story to prevent any of this from happening to someone else.

In those very real, traumatic and rare life events where I was either targeted or diagnosed with a rare disease, people saw me as a horse something very common and explained it away as ‘mentally ill,’ ‘it was in my head,’ ‘I needed to change my diet.” When in fact, these common occurrences were merely a part of a rare condition or rare life event, that if you did not dig deeper you could not find this rarity or the linkage.

Like in my rare, unprecedented life event in being targeted on a very large (some would say massive scale) and no one believed me. And this was despite sounding the alarm and consistently informing authorities that something was not quite right and there were people and some were in positions of authority committing illegal acts that ultimately came down to domestic terrorism and illegal spying and civil liberties and civil rights violations. These acts targeted and damaged my life, career, finances, reputation, and livelihood (as I faced threats against my life and my loved ones) and now my health. It was not until 2011 when evidence was clear that what I was saying was true that I was being targeted. [Then this is when I uncovered that I was being targeted since birth. It just did not start in 2009. I swear I could not make this stuff up.]

The why behind why I was targeted is the question, which is why I cannot speak on this publicly until the federal government either orders me due to national security reasons or the federal government prosecutes those involved. By 2017, my story gained attention among numerous communities of people including famous people and those high in society. I was even invited to do a TEDx talk on my experience.

As in my rare disease journey, my doctor did not believe me after informing him of my menstrual cycle getting shorter and shorter until I had no menstruation. In fact, it was not until my gyno found the reason for the lack of a menstrual cycle, which was due to the prolactinoma. Thankfully, the gyno was also educated in the possible causes of the prolactinoma, though the body of research is still being developed and studied. One of the causes he suggested could be linked to the medication I was forced to take in 2009.

Again, even then in 2009, no one believed me with the side effects I endured. In 2009, I had seizures and what appeared to be tardive dyskinesia from the medication, both of which I never had a history of ever in life (before that time). Yet the doctors gave me additional medication for the side effects, not checking to test and scan for neurological issues that could be occurring, which could have been the prolactinoma forming in its infancy stages. The medication that gave me for the side effects actually made it worse.

Since that ordeal in 2009, I healed my body. Once I got off that medication I began to research and study these conditions. I cleansed my body by doing a 60 day juice fast. I periodically every year did another short term 3 to 7 day cleanse. I no longer have seizures and what appeared to be tardive dyskinesia, though now I have prolactinoma, which is incurable.

While prolactinoma is said to be not life-threatening, the long term effects (and if not controlled) can lead to other conditions that can be life-threatening and/or challenging. Despite having this brain tumor, I live a full, healthy and happy life and continue to do all the things I enjoyed before.

I work: it is a work from home tech job. I show up for my company. I help my coworkers. I frequently go into the office to help with studies — I love playing with the technology. I have always been this way in any role or job I have had. This is especially since I have a zillion degrees (BA, MA, MBA, JD, and LLM) and know a lot about a lot. So, I tend to help and be a team player — even if it is not something within my function or role, I help. Why not? I do not have to be voluntold to do something.

I volunteer in my community, giving back and using my knowledge, skills, and experiences, as I always have since a child. This is no matter if it is volunteering for an event or serving on boards (I serve on a county board and LGBTQIA+ nonprofit board).

I recently signed up to play softball with a softball league on a recommendation from a coworker. And I did not regret signing up. It is a fun and supportive softball community.

A funny story about signing up: when I tried out for the league, I actually fell when we did the running portion. One of the league’s leaders were so supportive. They cheered me on, for me to get up, finish it, and so, I did.

I knew then that this softball league community was a community that gets it and really wants to create a safe and welcoming community. Needless to say, I play softball in an awesome and friendly softball league.

I continue to pursue my passion projects and learn different things. One of the things I did when I was first diagnosed with prolactinoma in February 2021, which now makes 3 years since my diagnosis, was create a bucket list of things I wanted to achieve. This was per the recommendation of my therapist. Actually, some people have remarked I did not skip a beat as I have given 100% in all areas of my life.

I am still chipping away at that list. But in reflection, I put on my bucket list I wanted to be a VP of a company. I am so proud of myself because I achieved that goal when I took the Head of Regulatory Affairs and Compliance job in Utah in 2021 and, later, in 2022 being promoted to the VP position, after the SVP was promoted to another position. Though titles did not change for me, the responsibilities and a significant pay raise did change. I have more things on my list but next on the list, travel the world!

I am shedding light on my patient story so that others understand the importance in showing up and doing the work for yourself and patients around the world. Common conditions are merely a part of the bigger, rare condition. Do not assume everyone is a horse as some people are actually zebras.

I never gave up sounding the alarm on my targeting and advocating for myself and my rights. I never gave up finding why my menstrual cycle stopped. I never stopped showing up for myself.

Call to Action

1. Zebras around the world never stop showing up for yourself. You know your body better than anyone else. Continue to advocate for answers and seek out medical professionals who are informed.

2. Those supporting the Zebra community: please do not stop showing up for Zebras. Kindness goes a long way and it does not cost you anything.

3. Employers: please advocate and negotiate for better benefit packages, if you do not already have a solid package. Things like comprehensive coverage, life insurance and long term care cannot be easily obtained for many people with rare diseases. One of the ways they may possibly get those aspects are through employers’ group plans. There is a win-win here as the company pays little most times for these things, yet they could retain talented and skilled workers who do not feel forced to go elsewhere for these benefits.

4. Insurance companies: offer comprehensive coverage options at an affordable rate. Also, create avenues for alternative treatments as these could be life saving and ultimately cut down the costs of long term treatments. These things could not only help those who have rare diseases but cure common conditions since some common conditions are embedded within the rare diseases.

5. Legislators: support and co-sponsor legislation that support research and funding for rare diseases and for funding for NORD, NIH, and patient organizations that facilitate and perform this research. Also, the Safe Step Act and the Pasteur Act are pieces of legislation that should be supported and passed.

6. Medical community: Develop expansive open-source information systems and enhance collaboration. These platforms will empower researchers, providers, and patients with real-time insights into emerging trends, treatment options, and potential contraindications of medications. By facilitating the identification of connections between illnesses, these systems serve as vital tools in bridging existing gaps and accelerating progress towards finding effective cures.

You can find more information about me and the original, patient story video and testimonial on my website at https://www.brandyrobinson.com and the fictional novel at https://www.bernicerathethebook.com (with also a comic book series on Bernice Rathe). You are free to repost this narrative and/or the video elsewhere. This is in support of Rare Disease Month. Note: The opinions and testimonials are that of the patient’s and no medical advice or guidance is being provided. The content is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always consult with a qualified and licensed physician or other medical care provider, and follow their advice without delay regardless of anything you hear or read in this testimonial.