Stand with Gianna & Ray
To make a gift by phone, call 408-954-8600.
Imagine being a healthy 9 year little girl walking to get ice cream with her grandmother, then suddenly diagnosed with lupus and staying in a Children’s Hospital for a year. Or 16 year old young man, playing 3 high school sports a year, lifting 400 lbs and then suddenly not being able to walk. Gianna and Ray don’t have to imagine because these things happened to them. We would like to introduce you to Gianna and her father Ray Mendez, a rare father and daughter who have lupus.
Ray's Lupus Story
Hi, my name is Ray Mendez and I would like to tell you my never-ending Lupus story which started 30 years ago. When I was 16 years old, I was in great physical shape, I was playing 3 high school sports a year and was in a state champion rugby club after school. I was feeling strong, I thought I was a star. I used to feel the same way about my hairdo until I started to get red blotches on my scalp. We only had HMO coverage and it was months before my primary stopped guessing and sent me to a dermatologist, who did more guessing before finally doing a biopsy. I was diagnosed with Discoid lupus (DLE). I was in denial because I did not have many physical symptoms at the time. About a year after my diagnosis, I started to have a few physical symptoms, but kept ignoring my condition and then the infamous SLE popped out of nowhere. My family had a huge family reunion in Los Angeles, when out of nowhere I collapsed and had a seizure in front of my entire family. After that I spent the next 40 days in the hospital and lost 70 pounds. I went from bench pressing 400 pounds to not being able to walk up the stairs when I got home. I was knocked on my butt and handed a wake-up call. This was when Lupus had me. My grandma came to feed me grandma style, I gained my weight back. But it was the wrong kind of weight, so to do something about it, I went to junior college to wrestle and get back in shape. I got stronger and seemed to be better, my scalp and new mylar rash seemed to clear; but all that happened was I got a false sense of security thinking I was a star again; little did I know it was the start of my roller coaster lupus journey. I was around 20 and liked to do things you do around that age, but I found out quickly, you can’t do that when you’re on a medicine regiment. This is when my roller coaster ride got crazy. I learned that 9 out of 10 Lupus patients are women. Here I am that 1 out of 10 guys who can’t drink when he’s 21 because his medicine is so strong that his body can’t take anything else. The lesions came back as bald spots on my scalp, and nobody knows about Lupus. I felt like I was alone, so I kept my lupus secret from others because I thought they might not understand or think I couldn’t keep up. I was playing Rugby internationally and competing all the time, even at work. I found out the hard way that I couldn’t continue living that way via a few emergency room visits. I needed to be a better patient. Once I had pleuritis so bad my lung was swollen and was rubbing against my heart every breath, that was some alerting type pain. At this point my friends knew what I was going through. The best thing was to share my condition and spread that weight I was carrying. I was recently diagnosed with Neutrophilic Lupus (NLE) a skin condition, they say it’s rare and they find one case a year, so here we go again. I know that stress fuels lupus, I know lupus symptoms suck and so do the side effects of all the medicines, but we have to stay the course.
I’m a father, that’s a beautiful thing, but when you’re in my shoes I must pay special attention to my condition so I can be around for a long time. Even though doctors say it’s not hereditary my Mija, Gianna, was diagnosed with SLE at age 9. Because of her I need to get my condition straight and walk the walk and be an example of a good patient. Although our symptoms differed as most lupus patients do, the game was still the same. Gianna and I have learned to keep it real, even if it’s real hard. I wear my purple bracelet every day, not only because it says “Gianna Strong” on it, marking her strength finishing college using a software because her arthritis wouldn’t let her type, but also to put people on notice that I have Lupus, it doesn’t have me.
It has been 30 years since my Lupus Diagnoses, and until a few years ago, I never thought or knew of a support group to help carry the luggage that being a patient with a condition with no cure can bring. My daughter she was told about the Lupus Hangout Support Group from a new Doctor. Of course, when asked, I joined her for the first one. Even though it's aimed for a younger crowd, it was great for both of us. I had never met other Lupus patients, and now I'm in a small room with more than a few. It was enlightening, the group leader Sandra really provides a safe and sensitive common place where you'll find sharing is caring. A place where you can relieve some of the weight you're carrying or ask questions about how others deal with the layers of their SLE. This group has really helped Gianna with her confidence to do what she has to be a better patient. It has really opened my eyes to how wide of a spectrum Lupus goes. The Support Group is a great place to share your journey and spread the weight around.
We at the Lupus Foundation of Northern California are proud to help patients like Gianna and her father Ray, find support in their community. By providing Virtual Lupus Health Conferences, in English and Spanish and our Office Hours with Dr. Parsa, from helping meet the needs of patients as whole individuals with the Buddy Program and our Virtual Support Groups, like The Hangout where Ray and Gianna attend, everything you help us do sends a message to the lupus community: that we are here, that we understand, and that we will not let patients walk alone.
Ray and Gianna inspire their fellow warriors every day. And you inspire us by standing with patients like Ray and Gianna.
Make a commitment today - a commitment to make more than a difference; a commitment to make an impact.
Ray's Lupus Story
Hi, my name is Ray Mendez and I would like to tell you my never-ending Lupus story which started 30 years ago. When I was 16 years old, I was in great physical shape, I was playing 3 high school sports a year and was in a state champion rugby club after school. I was feeling strong, I thought I was a star. I used to feel the same way about my hairdo until I started to get red blotches on my scalp. We only had HMO coverage and it was months before my primary stopped guessing and sent me to a dermatologist, who did more guessing before finally doing a biopsy. I was diagnosed with Discoid lupus (DLE). I was in denial because I did not have many physical symptoms at the time. About a year after my diagnosis, I started to have a few physical symptoms, but kept ignoring my condition and then the infamous SLE popped out of nowhere. My family had a huge family reunion in Los Angeles, when out of nowhere I collapsed and had a seizure in front of my entire family. After that I spent the next 40 days in the hospital and lost 70 pounds. I went from bench pressing 400 pounds to not being able to walk up the stairs when I got home. I was knocked on my butt and handed a wake-up call. This was when Lupus had me. My grandma came to feed me grandma style, I gained my weight back. But it was the wrong kind of weight, so to do something about it, I went to junior college to wrestle and get back in shape. I got stronger and seemed to be better, my scalp and new mylar rash seemed to clear; but all that happened was I got a false sense of security thinking I was a star again; little did I know it was the start of my roller coaster lupus journey. I was around 20 and liked to do things you do around that age, but I found out quickly, you can’t do that when you’re on a medicine regiment. This is when my roller coaster ride got crazy. I learned that 9 out of 10 Lupus patients are women. Here I am that 1 out of 10 guys who can’t drink when he’s 21 because his medicine is so strong that his body can’t take anything else. The lesions came back as bald spots on my scalp, and nobody knows about Lupus. I felt like I was alone, so I kept my lupus secret from others because I thought they might not understand or think I couldn’t keep up. I was playing Rugby internationally and competing all the time, even at work. I found out the hard way that I couldn’t continue living that way via a few emergency room visits. I needed to be a better patient. Once I had pleuritis so bad my lung was swollen and was rubbing against my heart every breath, that was some alerting type pain. At this point my friends knew what I was going through. The best thing was to share my condition and spread that weight I was carrying. I was recently diagnosed with Neutrophilic Lupus (NLE) a skin condition, they say it’s rare and they find one case a year, so here we go again. I know that stress fuels lupus, I know lupus symptoms suck and so do the side effects of all the medicines, but we have to stay the course.
I’m a father, that’s a beautiful thing, but when you’re in my shoes I must pay special attention to my condition so I can be around for a long time. Even though doctors say it’s not hereditary my Mija, Gianna, was diagnosed with SLE at age 9. Because of her I need to get my condition straight and walk the walk and be an example of a good patient. Although our symptoms differed as most lupus patients do, the game was still the same. Gianna and I have learned to keep it real, even if it’s real hard. I wear my purple bracelet every day, not only because it says “Gianna Strong” on it, marking her strength finishing college using a software because her arthritis wouldn’t let her type, but also to put people on notice that I have Lupus, it doesn’t have me.
It has been 30 years since my Lupus Diagnoses, and until a few years ago, I never thought or knew of a support group to help carry the luggage that being a patient with a condition with no cure can bring. My daughter she was told about the Lupus Hangout Support Group from a new Doctor. Of course, when asked, I joined her for the first one. Even though it's aimed for a younger crowd, it was great for both of us. I had never met other Lupus patients, and now I'm in a small room with more than a few. It was enlightening, the group leader Sandra really provides a safe and sensitive common place where you'll find sharing is caring. A place where you can relieve some of the weight you're carrying or ask questions about how others deal with the layers of their SLE. This group has really helped Gianna with her confidence to do what she has to be a better patient. It has really opened my eyes to how wide of a spectrum Lupus goes. The Support Group is a great place to share your journey and spread the weight around.
We at the Lupus Foundation of Northern California are proud to help patients like Gianna and her father Ray, find support in their community. By providing Virtual Lupus Health Conferences, in English and Spanish and our Office Hours with Dr. Parsa, from helping meet the needs of patients as whole individuals with the Buddy Program and our Virtual Support Groups, like The Hangout where Ray and Gianna attend, everything you help us do sends a message to the lupus community: that we are here, that we understand, and that we will not let patients walk alone.
Ray and Gianna inspire their fellow warriors every day. And you inspire us by standing with patients like Ray and Gianna.
Make a commitment today - a commitment to make more than a difference; a commitment to make an impact.