MY FIGHT WITH SLE
I am 20 year old girl taking bachelor degree in biotechnology from S,G.R.R.I.T.S in Dehradun. I am fighting with this disease from past 5 years and still continue with it. It was diagnosed when I was just 15 year old studying in 9th standard in Jan 2004.That time I was in New Tehri. I was too small to understand, what SLE was? But now after so many years I came to know what SLE is? I made a constant study in this topic and found many searches by the help of internet and books on SLE, I was constantly in contact with my doctors. Whatever I came to know about SLE is as follows.
SLE? WHAT SLE IS?
SLE stands for Systemic lupus erythematosus (SLE).It is a chronic inflammatory disease of unknown cause that affects multiple organ systems. Immunologic abnormalities, especially the production of a number of antinuclear antibodies, are another prominent feature of this disease. Its multisystemic manifestations and the complications from the use of immunosuppressive agents make the diagnosis and management of this entity challenging.
Patients with lupus produce abnormal antibodies in their blood that target tissues within their own body rather than foreign infectious agents. Because the antibodies and accompanying cells of inflammation can involve tissues anywhere in the body, lupus has the potential to affect a variety of areas of the body. Sometimes lupus can cause disease of the skin, heart, lungs, kidneys, joints, and/or nervous system. When only the skin is involved, the condition is called discoid lupus and is diagnosed by biopsy of skin rash on the face, neck, or scalp. Often anti nuclear body (ANA) test for discoid patients is negative or a low-titer positive. About 1–5% of discoid lupus patients eventually develop SLE. When internal organs are involved, the condition is called systemic lupus erythematosus (SLE).
SLE is an auto ammunal disease in which body immunity decreases down. The body capacity to fight against foreign invaders decreases down. SLE, the body's immune system produces antibodies against itself, particularly against proteins in the cell nucleus. SLE is triggered by environmental factors that are unknown (but probably include viruses) in people with certain combinations of genes in their immune system. It is a chronic disease and can affect any part of the body internal or external. The symptoms of SLE is so wide, is tough to diagnosed it .This can be fatal but with the advancement in medical, fatalities is decreased down. This is most common among women and can occur at any age.
treatment It is quite rare disease and currently have no cure ,but can be controlled to some extent with the help of steroids and drug therapy. Researches indicate that SLE may have genetic link, how it came still unknown.
Patients with SLE, such as avoiding direct sunlight, covering up with sun-protective clothing, and using strong UVA/UVB sun block lotion can also be effective in preventing photosensitivity problems. Weight loss is also recommended in overweight and obese patients to alleviate some of the effects of the disease, especially where joint involvement is significant
MY JOURNEY AND EXPERIENCE WITH SLE
How it come to me I don't know? But before the diagnosed of this disease I went through great difficulties, pain and suffer. I used to fell ill frequently, the passage of falling ill started from 8th standard when I was just 13 year old girl, in 2002.That time I was in New Tehri (uttarakhand).The climate was quite cool their. I still remember it was December I was shivering with cold .I was having temperature about 103 degree. My parents consult me to the local doctors, they said it is just a viral and advise me to have peracitamol. I had these medicines for few days. After having a medicine my temperature quickly drops down. And one day my whole eyes went red, my head was paining badly. It was so bad pain that I couldn't suffer it. My uncle Dr K.K Tamta is a surgeon, he consult me to physicians when he saw me and check me he said it must be sinus. He made my M.R.I test but couldn't get any result. Then he made my X-ray of my nose then it came to know that was clear case of syanus, and for one year I have medicine for this.
For time period I was fine, and became healthy. But later again in 2003 my health went down. I became weak and weaker and with this my mental level also decreases down, I used to depressed all the time. As that time, I was quite small to understand what is happening to me? I couldn't concentrate on my studies. My blood pressure went down. It was mainly count as 20-70 or 40-80. My father is an engineer in P.W.D, because of me I was giving problem to them also. He himself is a B.P patient and I was giving so much of pain to him.
SIGNS AND SYMPTOMS
September, 2003 I couldn't feel hungry, I used to feel hungry but cant able to eat any. I made a habits like if I used to eat a single bite of chapatti, I feel like I had eaten so much, then again the same condition, my temperature increased up to 102-103 degree Celsius. I consult the local doctors, again they advised me to have peracitamol and brufin etc. After taking these medicine my temp. comes to normal but after few hrs. it again increased. And this condition continues till one month.
On October-2003 suddenly my right leg started paining I had a pain killer for this and the pain just vanished. The same condition continues for 2-3 days and the next week my whole body started paining and the pain was die killing. The pain was so…. that I couldn't suffer. It was so bad pain ……......cuz that time I felt like I should kill myself. My each and every joint was paining. All my joints swelled up and all my joints marked reddish. There was rashes all over my body. I was in such a situation that I can't able to get up from my bed. It was such a worst condition that I can't able to sit on Indian toilet. There was pain all over my body.
Then my dad took me to the hospital at Dehradun which was four hour rout from my home town New Tehri that time my uncle Dr Tamta was posted at Corronation Hospital, there Dr. Bisht check me, he told that it is rheumatoid arthritis. He advise me to have pain killer medicine, disprin. I used to have 6 medicine per day, 2 at a time thrice a day. I continuously have disprin for 20 days. After having so much of disprin my pain died. That was so bad experience for me. And for one month I was fine, no pain But none of the docter advice me for the blood test
TRATMENT AND DIGONOSED
After one month on December 2003, all my lymph's swelled up. As I don't feel pain, so couldn't recognize it. My lymph's swelled up everywhere, my neck, underarms, under thighs etc. rashes where all over my body. When my papa saw it, in no time he took me to the hospital to Dehradun. He consults me to many doctors. There doctor's couldn't understand what happened to me. I consult with Dr. Ajay Sharma, he advice me for C.B.C (complete blood count) and FNAC, all my reports where not normal, when they saw it, still they couldn't understand what happened to me. Then Dr Neena Verma and Dr Ajay Sharma, both advice me to go to AIMS in Delhi or to Chandigarh PGI. As Chandigarh was only 5 hours route so my parent took me to PGI Chandigarh. There I was admitted for 20 days in 15 Dec,2003. During these 20 days I was constantly checked by doctor- Prof. S.Verma , Dr Jain. I went through lots of test and investigation. My whole result of CBC was abnormal,-C3 and C4 level was low , ANA was +ve . I was found with iron deficiency, systematic symptoms, active disease I went through lots of investigation like blood test, urine test, MRI, whole body CT SCAN,X-ray, ECG, etc.
After so much of investigation and suffer they finally diagnosed it as SLE (Systemic lupus erythematosus).
In 10,Jan 2004. I was followed with lots of medicine like wysoline-50 mg. shelcol. folic acid, C-PINK. That time SLE was new to me , I haven't heard this name before, and I was too small to understand it. Whatever it was I except it, but my fight still continues with it.
For one year I was fine my weight increased, I reached from 45kg to 65kg.it was all medicine side effect
But after period of one year, in 2005 my weight started decreasing down with the decrease in dozes of wysoline, from 50 mg I reached to 5mg. Slowly I gain my original shaped. I was happy unaware of this that my happiness will not last long.
Repetitions of disease
In August 2006 when I reached in 12th standard, the whole condition repeats back. Whatever condition I went through before, the same returns me back. Again the same, swelling of lymph's, whole body pain, rashes all over, swelling of the joints. I know it was tough to suffer that pain. I thought after diagnosed my problem will be solved to some extent. But I was wrong SLE is my life time achievement. It will be with me till I alive.
To ease that pain? It is tough for me. I can't , I cannot tolerate it again. Then again I consult with my PGI doctors , they increase my dozes, and what its? not that I am fine?
After one month my right foot drop down. That was very astonishing and shocking condition for me. I never thought that this SLE will paralyze my foot. My right leg went motion less. I Couldn't walk, I really asked God why? Why me? I busted like anything and I cried and I cried. I was there to kill myself, helpless, cannot do anything. And again I went to Chandigarh PGI. Again I was admitted there for one week. My whole test where repeated again, similar test again, again the investigation was done. They found me a BP patient, they followed me with endoxin injection i.e cyclophosphamide- 1gm and every month I have to take that injection, along with I have to do physiotherapy of my foot.
The experience of that injection is worst. After taking Endoxin I suffer nausea, vomiting, constipation During that period whatever I eat, everything reversed out. This one week it is tough to live. From that day till now I am suffering and I know I have to suffer though out.
I know? how would I have given my board exam? no tuition , no school. It made for me the tough challenge. In 10 and 12 both the classes I was ill. But I don't loose hope . I am a struggler and I will struggle. I just believe whatever is happened to us is just a destiny, and I left everything on God. I made my strong will power, faith and confidence in myself and belief on God. My support my parents my friends and the almighty power together gave me a power to fight. With all my hard work faith and confidence I succeed. I secure 67% in 10th and 70% in 12th. And right now I am taking bachelor degree in biotechnology from SGRRITS in Dehradun
Nothing is impossible when you have a confidence in yourself and have strong will power, you can do anything. Just have faith on almighty who is watching everything. I just do the same thing, just continuing my life, easing all the pain, tolerating everything. No one can stop me not even this bloody SLE. Have patience one day you will succeed.
Thank you for writing your story out. I appreciate you sharing your experience with lupus. It's an ongoing process, of course, but its comforting to know that you are not alone and that there others like you out there.
I admire your courage Chitra-you are a very brave and powerful woman. I just know your story will inspire lots of other young women with SLE and help them learn to manage it and that they CAN manage it.
I hope you don't mind, I want to share your story with a friend of mine who also has lupus and writes books about it. Stories like yours are always very powerful and important.
I have lupus too but am 51 with two children. I now work from home and have managed pretty good myself.
Thank you so much for your story. Love and HUGS, Julie
I salute you.........
My mother is suffering from the autoimmune disease and is in a terrible state, could you please advise and share how you have managed.
Kindest regards Anjali