Meet our 2025 Face of Lupus
Each year we choose a lupus patient to be our Face of Lupus at our Purple Ribbon Awards. This year we are excited to announce that in 2025 we will be celebrating our 10th Annual Purple Ribbon Awards where we will honor Amber Shepherd. We hope you will take a few moments to read about Amber, a lupus patient who has used many of our services and also is one of our Lupus Buddies and a member of the Patient Panel in our Lupus Health Conferences. We are pleased to introduce you to Amber Shepherd.

I was diagnosed with lupus in 2013, 3 years after the birth of my daughter in 2010, at the age of 36. However, I will say that my fight began a decade or more prior. I was very sick a lot in my 20’s, hospitalized and became more familiar with the ER nurses than one could ever have expected. Even to this day we joke about how I should have my own cot at Los Gatos El Camino ER.
For many years I had 9 of the 11 markers for lupus and it was just the waiting game for the others to finally surface for the official diagnoses. I am also diagnosed with a rare disease immunodeficiency making the process with lupus very challenging. What I need for lupus makes my already low immune system even worse. So, it’s a very fine balancing act to keep both stable. My lupus is not a severe skin involvement but is a chronic internal organ involvement. This means almost every one of my organ has some issues, from kidneys, heart, lungs, brain, stomach, etc. I will face my 39th surgery in November and that doesn’t include procedures.
In 2022 I developed a very rare infectious disease that triggered damaging effects on my body and lupus. To this day I am still not rid of that disease and it piggy backs on my lupus. I don’t believe any lupus patient suffers from just lupus, but a long list of overlying conditions that is ever changing.
For many years I had 9 of the 11 markers for lupus and it was just the waiting game for the others to finally surface for the official diagnoses. I am also diagnosed with a rare disease immunodeficiency making the process with lupus very challenging. What I need for lupus makes my already low immune system even worse. So, it’s a very fine balancing act to keep both stable. My lupus is not a severe skin involvement but is a chronic internal organ involvement. This means almost every one of my organ has some issues, from kidneys, heart, lungs, brain, stomach, etc. I will face my 39th surgery in November and that doesn’t include procedures.
In 2022 I developed a very rare infectious disease that triggered damaging effects on my body and lupus. To this day I am still not rid of that disease and it piggy backs on my lupus. I don’t believe any lupus patient suffers from just lupus, but a long list of overlying conditions that is ever changing.

After having my daughter, lupus took away my ability to ever have another child. My complications with my daughter were severe and she was a 10-week early preemie in the NICU. While most parents were playing with their children and living full happy lives, I was formalizing my will, estate, DNR, and terms upon my death so my daughter was taken care of without me. I was planning my baby’s life without me, her everything. There is no way to ever explain the pain you feel in your soul hitting that head on.
The reality is this disease hits hard and doesn’t hold back at times. I can go from a decent day, to hospitalized within hours. Some days the pain and ailments are just debilitating and unbearable. These days, I feel what is my new “normal”, I am fighting Social Security Disability for permanent disability benefits. This fight has been going on for 2 years this go around and 5 years the last time. I am forced to work full time to provide for my family, hindering my health. At the same time, I am trying to finish my paralegal certification online through the Dept of Rehab so that I am able to work under a schedule that fits my disability. This schedule would help me make my 5-27 doctor appointments a month. It would allow me time to do weekly chemo injections of methotrexate, do weekly injections of Benlysta, 6 hours IVIG infusions every 21 days, take my excessive list of medications and be able to tackle the side effects. I often say, this disease isn’t for the weak.
The reality is this disease hits hard and doesn’t hold back at times. I can go from a decent day, to hospitalized within hours. Some days the pain and ailments are just debilitating and unbearable. These days, I feel what is my new “normal”, I am fighting Social Security Disability for permanent disability benefits. This fight has been going on for 2 years this go around and 5 years the last time. I am forced to work full time to provide for my family, hindering my health. At the same time, I am trying to finish my paralegal certification online through the Dept of Rehab so that I am able to work under a schedule that fits my disability. This schedule would help me make my 5-27 doctor appointments a month. It would allow me time to do weekly chemo injections of methotrexate, do weekly injections of Benlysta, 6 hours IVIG infusions every 21 days, take my excessive list of medications and be able to tackle the side effects. I often say, this disease isn’t for the weak.
Every day is a battle. But like I have always lived by “I may have Lupus, but Lupus will never have me”. That phrase became a huge part of my life when Christine V, another lupus patient, introduced me to the Lupus Foundation of Northern California. I only knew my own family members with Lupus who lived in the Midwest. The LFNC brought light to my darkest days, a beacon in the storm, an anchor in the rough seas & my hope amongst despair! They showed me what it was to have hope, support, love, empathy and understanding. Access to tools, meetings, Dr’s, and events with those who understood my journey without judgement. I have a small group of close besties that came from my interactions from this foundation or through me advocating on social platforms.
Without the LFNC, I honestly can say I wouldn’t be the strongest version of me. To think I started out as a newbie in the patients’ meetings to speak at those meetings. They allowed me to be genuine to my true self and advocate for others. Be a mentor and partner in the Buddy Program. To honor me as the representative for the LNFC to advocate on Capitol Hill. That blessing is one of my life’s most defining moments. It gave me a chance to speak for Lupus patients, show what this disease is really like and not just be some paper of statistics. Show them how we suffer, the fight we face daily, the challenges financially, the way the government doesn’t support a large part of this disabled group, and beg for funds to find a cure.
We were chosen to be Lupus warriors, the light in someone else’s darkness.
Without the LFNC, I honestly can say I wouldn’t be the strongest version of me. To think I started out as a newbie in the patients’ meetings to speak at those meetings. They allowed me to be genuine to my true self and advocate for others. Be a mentor and partner in the Buddy Program. To honor me as the representative for the LNFC to advocate on Capitol Hill. That blessing is one of my life’s most defining moments. It gave me a chance to speak for Lupus patients, show what this disease is really like and not just be some paper of statistics. Show them how we suffer, the fight we face daily, the challenges financially, the way the government doesn’t support a large part of this disabled group, and beg for funds to find a cure.
We were chosen to be Lupus warriors, the light in someone else’s darkness.
As you have read, Amber has not only used many of our free patient programs but she is also now an active mentor and supporter of other lupus patients! She helps with our Buddy Program, sits on the Patient Panel in our Lupus Health Conferences and as a lupus advocate at Capitol Hill. With your help we can continue to reach out to lupus patients with our free Patient Support and Education Programs.
Can we count on you to Stand with Amber and help us continue to support lupus patients like her?
Make your donation today or join us at the 10th Annual Purple Ribbon Awards and hear Amber speak!
Make your donation today or join us at the 10th Annual Purple Ribbon Awards and hear Amber speak!