Monica - Relapsing Polychondritis and Arthritic Psoriasis
Meet Monica! She is 49 years old and currently lives in Rome. 4 years ago, she was diagnosed with a rare disease called relapsing polychondritis and arthritic psoriasis. Monica has gone most of her life undiagnosed or continuously receiving the wrong diagnosis. RP is very, very rare, she says. The immune system attacks the cartilage in the body and can be very life threatening. Monica tells me that this disease started behind her ear. Her ENT (Ear, Nose, and Throat doctor) misdiagnosed her and waved it off as a cist. In 2015, however, her other ear had inflamed and Monica immediately knew it wasn’t just a cist. It was something else. Monica traveled all the way to the US and Italy and had doctors inform her that it was probably RP. Monica even had a biopsy done of her bladder when they found out she had calcifications in the tube she used to urinate. “I am 100% convinced that RP caused the inflammation of my bladder and interstitial cystitis is quite frequent in RP patients. When I asked online on our Facebook groups, several people had IC too. I am not in remission. I have tried many medications and they did not work. At the moment, I am trying biologicals. Hopefully, something will work.”
Monica has a 9 year old daughter that she loves very much and hopes to be around her for as long as possible. She is also a part of a study that is being conducted on RP in the USA at the National Institute of Health. The study has discovered that RP affects many parts of the body, much more than she had thought. Monica gets pain in her ribs, throat, nose (all of her nose in flames and has reduced by 50% in just over a few years). “I am afraid I will lose my nose to RP. I am looking for a plastic surgeon who is willing to help me reconstruct my nose. I also get pain in my sacroiliac area and knees. This too is quite common with RP. RP patients must also often check their trachea and heart.”
“I would like to speak more about RP and let people know about the current study in the USA. Hopefully they will discover more about this disease to help us patients. When I got sick, most doctors did not listen or believe me. Many times I was told I was imagining symptoms. People started to listen only when symptoms became very evident. I found this frustrating and painful. Doctors should listen more to their patients. In the USA, doctors were more helpful and willing to listen. Now, I had found a good staff of doctors here in Italy after a long search. They have spoken to researchers in the USA and are willing to investigate and learn more about RP. Other symptoms I have are bloating in my stomach, my feet hurt very often, my body can become very rigid, my hand hurts (articular pain, especially fingers), and sometimes it feels like my head is going to explode.” Monica experiences strong pains and extreme numbness due to RP.
When asked about her daily life, Monica tells me that she has both good and bad days, like most of us do. Monica tells me about how RP has been the cause of her gaining more and more weight. She tells me that she had gained 35 pounds in 3 years. “I used to be thin and agile and quite beautiful. The medicine and disease slowed me down.” Monica’s metabolism stopped and she began to gain more weight. “Cortisone was the number one cause of all of this. I am on a very strict diet and can not lose weight. But I will not give up! My looks also changed because RP is eating my nose. It has become much smaller from the point to the bridge and is going down. I am starting to look for someone who will help me reconstruct my nose. It is constantly inflamed and is shrinking in size. So I have lost my good looks quite rapidly. I also move much less because of joint pain and all this weight. For example, I can’t even tie my shoes anymore. I also have chronic fatigue, so my super energetic self now has to cope with extreme tiredness. I try to do as much as I can, but I often need to rest. I also react very badly to stress. As soon as something stressful happens, I inflame. My nose, my ears, and my throat begins to hurt. I also often get postular bubbles on my right hand and pulse and psoriasis starts. Of course, inflammation can start even when I am relaxed, but it is usually connected to moments when I am more tired. On vacation, I inflame less. At work, more. I also have noticed the worst part of my body is my right side. There is a huge difference between the right and left part of my body. Usually, my right ear inflames. Also, only my right sacroiliac inflamed. Also, I only get postular bubbles on my right hand. I have interstitial cystitis that is on my bladder on the right. IC can make life complicated. When I am inflamed, I need to go to the bathroom every 5 minutes. It is very painful and embarrassing. You have no “waiting time” and can not wait in line for the bathroom. I wish they had invented a medical card for this disease to have priority access to toilets. Also, I have lost my independence. If I want to travel with my daughter, someone has to come with me in case I get sick or something happens. This makes me frustrated because it limits my freedom and I always have to invite someone or ask them for help. When I get sick, I have very little support and solidarity from people. They all kept their distance and were never really there for me. I cried alone, went on vacation alone, went to the doctor alone, etc. That is when I realised, I did not have many true friends.” It hurts my heart to hear that Monica doesn’t have true friends to help her during such a hard and painful time of her life. No one should be going through all of that alone. Monica told me that people would sometimes call her, once in a while, simply to ask how the test went. Nobody ever accompanied her to exams. Most of Monica’s family lives abroad, so they only help when they are visiting Monica. Monica’s mom has MS and cannot accompany her and her friends are too involved with their own lives to be of any help. “So I ended up on my own so far.”
I asked Monica about the initiatives she has taken in order to raise awareness for RP and she told me, “I was interviewed by one of Italy’s most important newspapers, La Repubblica. Then I wrote to the Italian Observatory on rare diseases complaining that they did not have RP in their list. The Observatory wrote me back and published a piece with my story on their newsletter and website and included RP in their list of rare diseases. I also started the Italian Facebook page on RP and try to be active on the European and USA based RP Facebook pages. I am also part of a study on RP that is being conducted in the USA at the National Institute of Health in Bethesda. I hope this will bring more knowledge on RP and hopefully a cure. I also hope to get my Instagram page to grow. At the moment, I only have 180 followers, but hopefully it will grow so that I can gradually use IG to talk about RP and how it affects my life.” It’s amazing to hear everything she has done in order to raise awareness of RP. She has taken huge and amazing steps to help her cause, it’s extremely impressive.
Monica wants to tell the world to be more kind and to notice people who suffer in silence. It takes effort, but it is worth the gratitude and smiles the world and you will receive in return.
If you would like to learn more about RP, please look at the links below:
Please feel free to follow her journey on her social media (Instagram @monicabecate_autoimmunewarrior).
- Anisha Yellamraju