The story of Vanamala
Living with MCTD: A phoenix attempt
30 years ago, at the age of 16 years, I was diagnosed with Mixed Connective Tissue Disease (MCTD) which is a rare chronic autoimmune disease and is a lifelong illness for which there is no cure so far.
Immune system disorders cause abnormally low activity or over activity of the immune system. In cases of immune system over activity, the body attacks and damages its own tissues (Autoimmune diseases). Immune deficiency diseases decrease the body’s ability to fight invaders, causing vulnerability to infections.1,2. The immune system normally guards against germs like bacteria and viruses. But here it involves your immune system mistakenly attacking healthy tissue 3
MCTD is a overlap disease which may present symptoms of Lupus, Rheumatoid Arthritis, Polymyositis, Scleroderma, Raynaud’s, pulmonary hypertension and Sjorgrens3,4. Mixed connective tissue disease can occur in people of any age. However, it appears to be most common in women under the age of 50 3.This disease can affect various organs such as skin, muscle, the digestive system and lungs, as well as joints, treatment is targeted to manage the major areas of involvement. The immune system attacks healthy cells & tissues causing a variety of problems and symptoms of various organ systems.
In my case, I experienced mainly Symptoms of Raynaud’s, Rheumatoid Arthritis and Raynaud’s and Sjorgrens and pulmonary hypertension. My immune system attacks my joints and muscles causing a lot of weakness and pain.
I am originally from India, Karnataka state and Mangalore district. I am a good Classical dancer, singer and an artist too. I am from middle class family. I am lucky to have my doctor, Dr. Prabha Adhikari Yenepoya Medial College Hospital, Mangalore who treated me from the beginning for MCTD. I had so many treatments, so many needles, and so many tests. She saved my life uncountable times from this worst incurable painful disease. Due to the painful condition of my disease I have troubled her a lot. But she is amazing and ever smiling consoling me and never allowed me to feel low. Today I am living because of her good treatment, kindness & spiritual words.
That fateful day, year 1990 August, when I couldn’t get up from toilet seat. Sudden severe pain in my knees. When Observed in mirror I could see my swollen face & my family thought I gained wait. After few days my finger joints showed puffiness and I experienced severe pain. The burning tightness in my muscles or the shooting pains in my joints, which are sharp enough that even the slightest movement makes me gasp. My fingers and toes had also started turning stark white every time they are exposed to tiniest bit cold and I had to start my each day putting my fingers in hot water for 30 minutes as my doctor’s advice, but slowly losing my normal color.
Before starting treatment my mom went to various doctors. So much money we spent to cure my disease. In the mean time Ayurvedic treatment was also done. My relationship with my family is very strong. By God’s grace, even when I was at my worst, my mom was doing everything for me including dressing, bathing and feeding. She never made me feel alone. She never treated me like a sick person or an incompetent person but loved me as a new born helpless child. I am fortunate to have her in my life.
During the time of my diagnosis (1990) I didn’t experience any symptoms which I am facing now. I just felt the way I always felt during activity—a little out of breath. I never felt dizzy, no chest pain, no fatigue, no real symptoms. So, naturally, I thought so many times taking medication was useless, but I regularly took medicine what my doctor had prescribed and I continued to live my life with MCTD. I partied with my friends, I went to college full-time, I worked fulltime, and I never let the thought of this disease bring me down because, honestly, I didn’t care.
I never searched in internet what disease I have, especially because I believed my Doctor. I am doing my daily work, as regular people do. But I feel sad to say I left my dance class because of chronic joint pain. Sometimes my health would change from one day to the next, so drastically that has made me strong and a more optimistic person. Those who knew me appreciated my strong will and hard work.
After I completed education, my doctor called and gave me a job as Clinical Research Coordinator. I was proud to join under my own doctor. My journey started from the day of getting my job with the treatment including the drug Predisolone but my life savior drug is Sildanafil
I started to notice pain in my wrist and fingers. But I never lost hope in life. Several times I got admitted in hospital and worst of all, a little illness also could land me in the hospital.
Sometimes I used to get up in the morning with severe muscle weakness such that, I was unable to get out of bed and could not dress or hold a cup or spoon, and had difficulty swallowing solid food. In addition, raised rashes on cheek, redness on ear, hair loss and painful red oral ulcers. sometimes I would get severe ulcerate rashes elbows, finger tips and toes. Pain in my wrist and fingers turned severe. I also used to get blood clots in my legs especially in rainy season. I began experiencing issues with very poor circulation in my all finger tips & toes. They would turn bluish purple and become very numb and uncomfortable. Along with this my skin seemed to be getting very hard and thick on my hands, all of which were making it somewhat difficult to perform my job functions It hurts way worse than it looks.
I’m not sure if that’s pus or it’s white because there’s no blood flowing any more, it has drained a little clear fluid but the pain is getting worse and my whole finger hurts. After high dose of antibiotics and other medicines, pain was reduced but I lost my fingers and finger tips, from symptoms of Raynaulds.
My disease had an impact on my professional life also. I was hurt numerous times because of insolent people. Many would refuse to accept food from me seeing my deformities. I was emotionally condemned to face wretchedness. I suffered with inferiority complex for a long time. Social support can have a huge impact on mental health, when you’re facing this type of stress. But Sometimes, I would not get it in my professional life. Automatically it made me behave rudely, which would leave me alone causing lot of stress. But I could overcome this critical situation with support from my good understanding friends.
Time went on and I felt my body condition is slowly deteriorating. It attacked my legs as unhealed ulcer on and off cured and also had mouth ulcers.
Recently about 2 years ago multiple painful unhealed ulcer on both legs and during last two months it was severe followed by fever. Unhealed ulcer was increasing day by day. I started taking pain killers in the morning and evening and I have also used antidepressants. But nothing worked out this time. I was unable to walk even one step also. My dreams of being a wife and having children faded away. I began to lose hope. I felt that this is last stage of my life but still I tried to fight with my severe pain. I was depressed because of chronic pain. I was crying whole day and night. I just wanted to die. One day I wanted to end my life. I told my doctor and begged her to reduce my pain by hook or crook. My doctor would listen everything patiently whatever I say and decided to do surgery. She recommended Dr. Dinesh Kadam surgery specialist in Mangalore A.J hospital. I agreed because I had abundant faith on my doctor, who was my savior.
I went to meet surgeon and was admitted hospital on Oct 05th 2020 for skin grafting surgery as my doctor recommended. Though I was not willing and knew it will not be successful, I still agreed. I had no hopes of my recovery. Doctor who performed surgery answered all my questions. He is very caring person and agreed to do my surgery. I had surgery on 6th Oct 2020 for skin grafting. My doctor’s spiritual words made me take decision for surgery.
I am indebted to Dr. Prema Dhanraj from Raja Rajeshwari Medical College Hospital, Bangalore, who suggested all different kinds of possible medication & took extraordinary care and standard of treatment for my leg pain. She has a major role infusing life in me.
The procedure generally takes 3 hours to complete and the patient needs to be monitored in the hospital for several days. After discharge from hospital I met with my surgery doctor once in two days, then once in four days, then once in 15 days. I was surprised as my wound was healing. Now my ulcer is healing with 98% recovery. Donor site was healing and clean also. Now I am back to my duty from 01 Dec 2020 & working with full confidence and happiness. I am overwhelmed with joy to say that i can walk without taking any pain killer.
Living life as best as I can with this disease, is the feeling which that no one understands. Who knows what tomorrow holds. Miracles happen every day, and my miracle could be right around the corner. So, I will look forward today.
Finally I know it as my co-pilot in life. It’s always there with me, along for the ride, it’s still possible to lead a happy and full life, and you just need to make adjustments. It may feel like you are alone but your doctor, family and friends with you every time.
So, I will look forward today and value what I have in my present world, my present health, and my present life. For today, I am alive — we are alive. And what could be better than that? And yes, I am finding my identity again as Ms.Vanamala ,the ever enthusiastic person.
MCTD has taught me to live life. I am more appreciative of my quality of life rather than the quantity. I am blessed to have dedicated doctors who treated me, loving parents, and friends. Without my faith, I would not have been able to overcome the challenges. They all are encouraging me to be a better person than I was.
Live your life with no regrets, learn from your mistakes, and don’t ever wish change a thing or wish to have done anything differently. Everything that has happened happens for a reason, it gets you to where you are today. Love with every ounce of your soul, if you give that kind of love, someone, somewhere will want give it back to you.
The reason I am writing this is to say that, if any of you out there have MCTD or any other rare incurable disease don’t take your symptoms lightly. If you have these diseases ,it does not mean that your life is over. Having this disease can be difficult. I’m not going to lie and say that it’s easy. Take your doctor’s suggestion and take medicine what doctor prescribes. Always have faith in your doctor. You should be fortunate enough to get a good doctor. I am fortunate to get all these three efficient doctors in my life.
Leave it to doctors; they know the best, “More than 40 years of medical knowledge can’t be replaced by 10 minutes on the Internet.” I believed my doctor, accepted what she told me, and I am now fine. Thanks to all those who joined me to make me see new sun shine.
- Danielle Antin-Ozerkis, MDa,*, Ami Rubinowitz, MDb,Janine Evans, MDc, Robert J. Homer, MD, PhDd,Richard A. Matthay, MDe
- A. Lawrence . A. Aggarwal . R. Misra (*)Department of Immunology,Sanjay Gandhi Post Graduate Institute of Medical Sciences,Lucknow, 226 014, India
- Kimberly A. Fisher, Nicholas S. Hill,and Harrison W. Farber