Showing posts with label CCM1. Show all posts
Showing posts with label CCM1. Show all posts

Friday, February 27, 2026

Healing Ancestral Trauma

 

For centuries people have been captivated by genealogy, tracing their ancestors through historical records for various reasons. In recent years, DNA tests have taken genealogy to a whole new level. This is a DNA chart of me, my sister Nita and my brother Gilbert. Siblings have different DNA, despite sharing the same parents. We each inherit a unique, random combination of 50% from each parent. Phillip isn't on this chart because he didn't take his DNA test with Ancestry.com.

About 16 years ago, my brother Phillip was the first in my family to take a DNA test. He was interested in finding out if we had Sephardic Jewish ancestry. Unfortunately, at the time the $99 DNA test he took only supplied information on our father’s side of the family. A year later I had a DNA test done by Ancestry.com. By that time the average DNA test provided both paternal and maternal DNA information. In the beginning my interest was in healing generational trauma because I saw a pattern repeating in my life which involved extremely unfair real estate deals that I couldn't logically explain. It became obvious that healing generational trauma would require disrupting established power structures within the family which would require me, the youngest female in a very traditional Hispanic family, to break inherited cycles of dysfunction. Through self-awareness and emotional processing, I could clear the trauma in my lineage. I realized that I went along with the status quo to keep peace in the family and it never worked in my favor. 

Previously, since my DNA is mostly Spanish, I was  taking on the responsibility of the misplaced Jews who lost their homes and all their belongs during the Spanish Inquisition and the misplaced Native Americans due to the Spanish Colonizers in the Americas. But then I realized I am 43% Spanish, 20% Native American, 10% Sephardic Jew and a 27% mixture of a whole bunch of other stuff. In other words, my ancestors experienced both victory and defeat. So, logically, how could I be responsible for the Spanish Inquisition? LOL

I then discovered the study of epigenetics and found that we can carry our ancestors' trauma through epigenetic inheritance. Stress impacts gene expression, turning genes "on" or "off" like a dimmer switch without changing the DNA sequence itself. This affects our descendants' stress responses, mental health and behaviors. That would explain why children born into the same family experience different levels of stress-related behaviors. Past traumatic experiences can leave biological marks, influencing the hormonal systems and brain function in future generations, leading to heightened anxiety or depression. While these marks exist, healing is possible through therapy, and acknowledging family history to prevent passing on these chains. So here I am, trying to heal my family.

Our family's DNA did have an impact that aligned with Phillip's interest in discovering his Sephardic Jewish ancestry, but maybe not the way he thought it did. He passed away September 4, 2025 and in our last personal conversation, he said he wanted to get an updated DNA test. I wish he could have for so many reasons. He seemed to be trying to come to terms with a few things in his last days. Phillip was the only immediate family member who had read my blog regularly over the years and I miss his commentary immensely. There were times when he and I had long phone conversations about spirituality and quantum physics, in the same conversation. He always had a way of taking the conversation to the next level. In the last few years of his life, he didn't get to spend time with the Fajardos. There were unspoken moments when I knew we didn't see eye to eye on religion & politics so we just left well enough alone. 

It seemed almost poetic that my research had taken me back to the 13th century Spain when the Fajardo Army of southern Spain, described as a prominent, elite lineage, had consolidated their forces with the Catholic Monarchs, Ferdinand and Isabella to take over all of Spain during the Spanish Inquisition. Tstatutes, they were among the primary enforcers of these discriminatory Spanish laws that required proof of Christian ancestry "pure blood." These laws were used to exclude Jews, Muslims, or non-Christians from public office and universities. Yet, on the flip side, the surname Fajardo is considered to be of Sephardic Jewish origin due to its historical connection to converso (forced convert) families who fled. Our lineage first went to the Canary Islands and then to New Mexico right after the Spanish Inquisition. It reminds me of the extremes in current day United States, especially Phillip's immediate family of "Born Again Christians" vs the rest of the Fajardo family. It's a perfect example of how all families throughout the ages have their differences. Some of the Fajardos during the Spanish Inquisition were on the side of the Catholic Monarchs and some were Sephardic Jews. We truly do carry our ancestors' trauma through epigenetic inheritance. 

Phillip was diagnosed with a brain tumor in May 2025. He was having seizures and suffered a severe brain bleed that his hospice nurse confirmed would ultimately take his life. Earlier today I opened facebook and this post appeared to remind me that he was diagnosed with a brain tumor and had it removed exactly 16 years ago today. At that time, 16 years ago, the neurologist said he only had 2 years which tell me that Phillip was misdiagnosed. 


But there I was in August, just a couple of weeks before he passed away, having our last private conversation. His wife was glaring at us across the room. It wasn't until then that I realized just what an oppressive relationship he had been in for all of these years. 
It had proven to be useless to bring up any topic his wife didn't approve of. My ongoing research into the "Common Hispanic Mutation" (CCM1 - Cerebral Cavernous Malformation)  and the fact that it is often misdiagnosed as a brain tumor was right at the top of the list of topics that weren't allowed to be discussed. Phillip's wife was treating him with a hand full of non prescribed drugs and he had signed Advance Directives saying he didn't want any more medical care. So there I sat with all my years of research about the genetic mutation that's highly prevalent in our New Mexican blood line on both our father and mother's side of the family. Yet his family ignored the fact that our genetic legacy came from a small group of early Spanish settlers, linked directly to the historical ideology of Limpieza de Sangre (purity of blood) that is scientifically known to cause brain bleeds.

During our conversation Phillip said to me "You and I were cut from the same cloth." I smiled and said proudly "Yes, we were." I felt that in the depths of my heart, yet in the back of my mind I was thinking "Yes, with the same genetic disease, caused by our ancestor's fixation on having pure Spanish blood. And sadly, the same mindset of the right-wing Christian nationalists government who want to keep 'America' white." 

I couldn't save my brother. I strongly believe he is in a better place. When I think of him, I see his healthy, brilliant face in a beautiful field of of mushrooms. 

Phillip Fajardo

The good news is that others have found my blog helpful and informative. I had a doctor from Dallas and one from El Paso who found my blog about 6 years ago. They were both impressed with my research and asked if I would be interested in taking part in their CCM1 studies. At the time, I was in my mid-sixties and I don't drive long distances, so I refrained, but my research was helpful in tracing some of my relatives with the CCM1 gene to the Santa Rosa, NM area. I have also been contacted by many distant cousins who have found my blog because they are on the same journey of self discovery through ancestry. When you do a Google search of Puerto de Luna, New Mexico, my blog is the first thing that comes up because it is literally a ghost town now. 

I discovered much more information than I bargained for when I signed up to become a member of Ancestry.com, thinking I would keep the membership for 3 months. Here it is 15 years later and I have been on a quest that has taken me on an amazing journey through my family's colorful past. Tracing the Fajardo surname back to Spain as far back as the 1200's has been a mind blowing, educational experience.

I started writing about my research for my children and grandchildren because after my parents passed away, I felt like I should have asked more questions. The next generation may be interested in it some day, but meanwhile I am connecting with cool cousins. At the bottom of this post you can click on "See More Posts" and it will take you to older posts.

The journey actually began when I was 16 years old, my junior year in high school, when my parents sent me to live with my Grandma Rosita Padilla in Puerto de Luna, New Mexico as a punishment for skipping school. I was having anxiety attacks at school. That all disappeared when I went to Santa Rosa High. I felt seen and heard. I loved my art teacher, Mr Lopez. I felt a deep connection to my ancestors who had been in New Mexico for over 400 years. In the quiet times, alone on the farm, in my grandma's adobe house, that my mother had helped to build and in the chile fields next to the acequia. Or on the weekends when my cousin Percy Padilla and I worked at the small store/gas station in Puerto de Luna  called "Mercado Coronado." The store was next door to what used to be the Grzelachowski General Store, which is is known for having the likes of Billy the Kid as a regular customer in the late 1800's. I felt that I was surrounded by the spirits of my ancestors and there was an underlying feeling that I had been there in the previous century. It all felt oddly familiar. I felt like I was finally home.

I didn't have time to do a deep dive into my past until years later, after my parents had passed away and my children were grown. Building my family tree has been a nightly activity. The historical discovery of my parents homeland of New Mexico and the journey of my ancestors from Spain has been truly fascinating.

I've learned that a well-researched family tree typically reaches back to the 17th or 18th century with good parish recordsI've traced my mother's paternal Padilla lineage back to Anton Martin de Padilla who was born in Sevilla, Spain in 1536. I've traced my father's Fajardo lineage back to my 9th Great-Grandfather Jose Miguel Fajardo born in the Canary Islands in 1591. But I can't help but think his family was just traveling through when he was born because his son, my 8th Great-Grandfather Alonso Fajardo was born in Santa Fe, New Mexico in 1656

Fajardo Coat of Arms

I haven't found a connection but there was an Alonso Fajardo de Entenza, Governor-General of the Philippines (1618–1624), who was a Spanish nobleman born in Murcia, Spain and he was the son of Admiral Don Luis Fajardo. He was a Knight of the Order of Alcántara. The Fajardos had been sent out to conquer the world and it appears that some ended up in in the Philippines just before the first Fajardos came to New Mexico. They had to be related but I don't know exactly how.

The surname Fajardo originated in the northwestern region of Galicia, Spain. With roots traced to a nobleman, Pedro Anes Galego, Lord of Santa Marta de Ortigueira. He was the progenitor of the Fajardo surname. Fajardo is a Galician/Latin term for a beech wood or tree. Then the Fajardo family emigrated to Murcia in 1296 and became high-ranking officials of the Crown of Castile. 

You can't imagine the mixture of emotions I had when I discovered that the Fajardo family was the most powerful and prestigious noble lineage in the Kingdom of Murcia, Spain beginning in the 13th century. 

The prestigious Spanish noble title held by the Fajardos was Marqués de los Vélez. It was a title that held major influence in the region for centuries and was first granted to Pedro Fajardo y Chacon in 1507. He was a prominent military leader and politician. I just read a blog written in 2022 about  Pedro Fajardo y Chacon's iconic Castillo de Vélez-Blanco, also know as the Castillo de los Fajardo located in the town of Vélez-Blanco, Andalusia, Spain. It is said to be a remarkable example of a Spanish Renaissance Castle and it has been declared a historical-artistic monument belonging to the National Artistic Treasury since 1931.

Castillo de Vélez-Blanco,
also know as the
Castillo de los Fajardo

Read more about the castle here.

The importance of the Fajardo family in the history of the Crown of Castile didn't go unnoticed by great authors of Spanish literature. In the 16th-century, because the Fajardo family of the Kingdom of Murcia, held such immense power, they became natural subjects for Spain’s greatest writers. There were satirical plays written for them. Research into Spanish literature highlights connections between the poet Acevedo and members of the Fajardo family

With all of that being said, I have known from the start of my ancestry research that the Fajardo and Padilla lineages are only 2 of many of my lineages. Those are just the names I was assigned in our patriarchal naming system. I actually have more Chavez, Padilla and Baca DNA because they are on both sides of my family tree.

In closing, for years I had come across stories of my Spanish ancestors expelling Jews from Spain and conquering the Americas. Ancestral trauma healing involves identifying and releasing emotional, physical and spiritual wounds that have been passed down through the generations. These wounds manifest as unexplained fears and toxic patterns. Healing requires forgiveness. Forgive yourself above all and forgive others. Ancestral research empowers future generations. I've always felt there has to be a reckoning of accumulated damage done by our ancestors. Being a deep thinking, peace loving healer, I wondered if I had been chosen in my lineage to even up the score. Not as a punishment, but to heal the lineage for my family and future generations. Therefore, I have experienced genetic health issues and botched real estate deals to bring it all to my attention. This blog is just one layer of my personal healing process. Thank you for being a part of my journey.



Friday, August 19, 2016

The Common Hispanic Mutation


This entry in my blog is dedicated to all of my relatives that either currently have Cerebral Cavernous Malformations or have loved ones that have died of this very rare disease. I pray that one day very soon there will be a cure. Until then, I will continue to be an advocate by sharing as much information about the disease as possible and offer moral support to those in need.

It's been a rough week in my little corner of the Universe. My conclusion... nobody should attempt dealing with serious, chronic health issues alone. Having an advocate that knows your medical history to accompany you when you go to doctor's appointments and treatment makes all the difference in the world. It has taken me a few days to regain my composure after an appointment with a neurologist earlier this week. I suggest if you are going to see a specialist for the first time it is good to have someone with you, to back you up, so they don't think you are a drug addict or hypochondriac. Advocates are also a big plus when we are physically and mentally drained, which happens often when one has a chronic illness. My heart goes out to Barack Obama every time I have heard him speak of his mother fighting Cancer and simultaneously fighting the insurance companies for the last year of her life. And I am grateful that he took that very painful event in his personal life and turned it into something wonderful. The Affordable Health Care Act.

My issue is a little different but just as frustrating. As we all know, nobody likes to go to specialists and confront serious congenital health conditions. And to make things worse, when you go to the doctor, they ask the reason for your visit and they want an easy answer in ten words or less because that is all they have time for. They want to draw blood, write a prescription and send you on your way. Unless it is is a neurosurgeon then they want to figure out when they need to schedule brain surgery. This week was no different. I left my new neurologist's office feeling like I had been hit by Santa Fe freight train.

Over the 36 year time period that I have suffered with a seizure disorder and migraines, I have seen numerous neurologists. Each time I feel like I spent useless time, energy and money, never to return for a second appointment because I felt unheard and degraded with no solutions for my health issues. My first mistake this time was finding a neurologist online. I chose a young female neurologist mostly because her bio said she also does acupuncture. How could I go wrong with someone open to alternative medicine? The first clue that I made a bad choice was when I called her office, nobody answered and there was a message stating that I couldn't leave a message. When I arrived to the medical complex, I couldn't find "Building F" so I walked around the complex in the pouring rain with a sopping wet, poorly drawn map that was sent to me via email. Map Quest only gave a street address on my phone. A minor inconvenience compared to the rest of the visit.

The doctor entered the office giggling that I looked like a shivering wet dog. She asked for the purpose of my visit. I was careful in answering because in my past experiences with neurologists, I have been accused of wanting pain killers to get high because I didn't want to take Imitrex for my migraines because it made me feel like I was having a heart attack. Another time I was accused of trying to sue someone after a car accident because I was taking notes during my appointment.

So this time I arrived with a neatly organized folder of medical history. I really wanted to start the conversation with "I need to have some tests done for an illness called Familial CCM, Cerebral Cavernous Malformations, or sometimes called The Common Hispanic Mutation.  It is caused by mutations in the KRIT1 gene and causes low pressure vascular lesions of the central nervous system. It consists of clusters of dilated thin-walled blood vessels that predispose individuals to seizures and stroke. These clusters of dilated thin-walled blood vessels are often misdiagnosed as brain tumors. They seem to multiply with age, as do the symptoms. But I decided to simply say "I have a history of seizures and migraines, my seizures are controlled with medication and the migraines aren't as bad as they used to be." So of course she responded with "So why are you here?" I said "Because I believe I have a genetic disease called Cerebral Cavernous Malformations (CCM1). I believe my brother has it as well. We have the same symptoms, his are worse because he is six years older. The disease is hard to detect so I need to have an MRI of my brain and spine with dye and genetic testing. If I test positive, I want my MRIs sent to a doctor in New Mexico who in the last year has received federal funding to do a study on the disease." She sat back and laughed and in a very condescendingly Czechoslovakian accent said "You can't just read information on the internet and decide you have this disease and ask for tests." THEN I pulled out my folder containing my medical history. I handed her a letter written and signed by 5 doctors from the Angioma Alliance endorsing the critical importance of pursing clinical genetic testing for patients who have a family history of CCM1. Keeping in mind that identifying a patient’s genotype may have immediate clinical implications for the patients and their family. It also stated that it is important for clinical monitoring as well as for future research endeavors. She said "Genetic testing is expensive. There is no reason for you to have the test. You are not going to have any more children. Maybe your children need the test, not you." She left the room with the letter from the Angioma Alliance and I sat there for about 5 minutes fighting back a strong urge to leave but I was waiting for the rain ease up.

She came back and started typing on her laptop. Apparently she had gone to do some research in the other room. I then handed her a report from my last neurologist stating that I had been diagnosed with another rare spinal/brain disease called Syringomyelia, a debilitating disease serious enough to be on disability. However the symptoms are the same as the symptoms of CCM1. I have reason to believe I was misdiagnosed. Either way, the only solution for either disease is to have spinal surgery if the symptoms become serious enough. I then handed her a report from my cardiologist stating that I have a 3 cm aneurysm on on aorta which is being closely monitored because if it reaches 5 cm I have to have open heart surgery. Meanwhile, I have to take blood pressure meds because sometimes my blood pressure spikes for no apparent reason.

Oh yeah, and about that genetic issue... my brother had open heart surgery in December to have his whole aorta replaced because his aortic aneurysm had grown to a dangerous 5 cm and during that same week, my other brother had an outpatient procedure to fix his Atrial fibrillation. I then handed her another report stating that I have an extremely rare right sided aortic arch with a Kommerell Diverticulum on my heart. She of course didn't know what that was. My cardiologist had never even seen one because fewer than 50 cases have been reported. It simply means that my aortic arch goes to the right instead of the left and has a bulge on it. And last but not least I have a aortic valve insufficiency which basically means the valve does not close properly so blood leaks back through the aortic valve. With each heartbeat, more blood than usual enters the left ventricle and so it needs to work harder. She left the office again. This time she came back in the office looking at me as if to wonder why I am still alive and started treating me in a totally different tone. I'm in fact, not a hypochondriac or a drug addict looking for legal prescription drugs. She documented 5 very rare medical conditions on my chart and ordered an EEG and 3 MRIs and still maintained that I didn't need to have genetic testing because she said it is obvious that I have the disease and there is no cure. No reason for an expensive test. I just went with that because I was too tired to pursue the matter. She said your physician's assistant at Victory Medical Center takes very good care of you and then she asked if I needed any pain meds and I told her I don't take them, I take turmeric for inflammation. She agreed that was a good idea as she handed me the notes she took and orders for tests.

I walked back out in the rain feeling completely wiped out. I drove south and upon arriving home, took a two hour nap. It took me two days to recoup from the very draining one hour doctor's appointment which felt more like a court date. And that is why I am writing this blog. I don't want anyone to go through what I went through earlier this week. Therefore, I have attached a few links about CCM1, the disease that I know many of my relatives have, most of whom have not been correctly diagnosed. The heart issues that I spoke of above are a whole other issue or maybe they go hand in hand, I don't know. Either way, my brothers and I have a congenitally compromised cardiovascular systems. My father died of a heart attack 15 years ago today and his father died of a heart attack as well. My maternal grandfather had 5 strokes before he died. I had a 1st cousin die of a brain aneurysm at the age of 50 and his brother and niece have migraines and other brain disorders. That's just the tip of the iceberg, there are too many more to mention.

So here is what I know about the rare disease called Cerebral Cavernous MalformationsKRIT1, sometimes called The Common Hispanic Mutation. About three years ago, while doing genealogy research, I came across some information about the disease. It causes vascular anomalies, that look like mulberries (mora in Spanish) Interestingly enough, as a child, I spent my summers eating mora while sitting in my grandma's mora tree next to the irrigation ditch at her house in Puerto de Luna, New Mexico. The photos of these vascular anomalies looked strangely familiar when I first saw photos of them. These purplish red mulberry shaped vascular anomalies cause many symptoms like seizures, migraines, a burning sensation in limbs, toes and fingers, strokes and sometimes sudden death. Cavernous malformations can form in any part of the central nervous system.

Some people with CCM also have cutaneous vascular malformations that look like this.... and guess what I have a "birthmark" that looks exactly like this and so do my offspring.


These Vascular Anomalies on the
Forehead are Common in My Family

This is one of the few photos I have of myself when
I was a baby. You can see the vascular anomaly on my forehead.





About 50% of the carriers of the (CCM1) mutated gene are asymptomatic but if you carry the gene, your children have a 50% chance of also having it. Even though it is a very rare disease, and the gene wasn't identified until 1999, it isn't rare to me at all. It mainly exists in the Hispanic community of New Mexico. Not Spain. Not Mexico. I've met a few cousins on facebook and Ancestry.com who either still live in New Mexico or have ancestors from New Mexico who either have the disease or have had a loved one die of the disease. It isn't really a club you want to belong to but at the same time, it's comforting to have relatives in the same sinking boat.

I can't really remember the year I read The New York Times article about CCM1 but it was written in 2007. It was a compelling story of a seemingly healthy 9 year old suddenly passing away due to a brain aneurysm.  When I read the symptoms the little girl's aunt, Joyce Gonzales described of the burning sensation in her arms and legs, I knew I was onto something. As I read it, I was myself having a burning sensation in my leg and toes (as I do today.) I immediately contacted Joyce in New Mexico. She had been working extensively, building a family tree that linked most everyone with the CCM1 gene mutation back to Ana Moreno de Lara de Trujillo, my 7th great-grandmother, married to Cristobal Baca. 

Update: I originally wrote this blog in August of 2016. I am updating it and it is now 2021. I have now discovered that Joyce Gonzales is my second cousin.

Joyce Gonzales 

Dr. Leslie Morrison

Joyce immediately put me in contact with Dr. Leslie Morrison, a Pediatric Neurologist from UNM who is a specialist in the CCM1 gene mutation. Since then Dr. Morrison has received federal funding to do a study on the gene mutation. I also had several conversations with a cousin in Santa Rosa, NM who is an asymptomatic carrier of the CCM1 gene, however she has two children with the disease. One of her child had been misdiagnosed with a brain tumor and the other had spinal surgery to have her angiomas removed. I gathered all my info and took it to my doctor and asked to have the gene test and after waiting about 6 weeks for results, I discovered that they had ordered the wrong genetic test. By this time, I'd a dental procedure and the infection in my gums went to my faulty aortic value and I ended up being very ill for about 3 months so I dropped the ball on the gene testing and a possible trip to New Mexico.

Meanwhile, as I mentioned above, my brother Phillip was having very serious health issues of his own. After a seizure in 2009, he was diagnosed with a "brain tumor." He had it removed, recouped and then he had to get a pacemaker for atrial fibrillation. He had also been diagnosed with a 5 cm aortic aneurysm and in December 2015 he had open heart surgery to completely replace his aorta. His physical therapist gave him a score of 110% after his heart surgery however, he is still having issues trying to find a seizure medication that both works for him and doesn't have horrible side effects. I'm still not sure why medical marijuana for seizures in adults is still not legal in Texas. It is a total mystery to me. I have had issues with my seizure medications in the past but doing well with the one I take now, but with my brother still having major issues with his, I sure would like to see medical marijuana legalized.

angioma.org


My headaches aren't anywhere as close to as bad as they used to be but I still have daily episodes of severe weakness, burning sensations in my spine, back, limbs and toes. About twice a month I have these awful episodes that for a lack of a better word I call the WaahWaahs. It starts with a strange tightening in my lower back around my spine and then I feel a "click" in my brain like it is misfiring or maybe an angioma bleed. It's hard to explain I just know that once that happens I am going to end up in bed off and on for a couple of days so I have to cancel all my plans, turn off my computer, TV, music and curl up with my cat in bed under my down comforter in a cool, dark, quiet room. It is an overwhelming, scary feeling and I have often thought it would be a good time to go to the ER and have an MRI to see if in fact my brain is bleeding.

So about a month ago I decided it was time to jump back on the path of CCM1 research and see a new neurologist. I say research because there is no known cure. That's the reason I haven't been in a real big hurry to get the actual genetic diagnosis. Then what do I do? Have brain surgery or spinal surgery. No. I don't think I am ready for that. I guess I have to agree with this last neurologist. If it quacks like a duck, it is probably a duck.

However, with that being said, I have been staying on top of all the research going on in Albuquerque, NM from afar. And coincidentally night before last, I hopped on Facebook and saw a post on a FB group I belong to called "The Genealogical Society of Hispanic Americans." Someone had posted an article about Cerebral Cavernous Malformations in New Mexico. 102 people shared the article and I stayed up until about 2:00 chatting with distant cousins that share this disease. It may be a rare disease world wide but it is a huge scary disease in my corner of the Universe. I have attached lots of reading material and most importantly, the first link below which is a must watch video.