Treatment And Awareness
- Every Lupus Patient will get the right treatment and best of medicines. There will be a drastic reduction in the number of Lupus patients dropping out of the treatment by bringing “Awareness” of the severity of this chronic illness. The number of cases of late diagnosis will come down drastically.
- Delayed diagnosis can severely damage major organs, like the kidneys, liver, heart and brain, to name a few. Lupus Trust India has come across many such cases where delayed diagnosis not only had devastating effects on the body, but financially and in terms of returning back to a normal life.
- Delayed diagnosis happens mainly due to lack of awareness even amongst medical professionals.
- Lupus is known as the “Great Imitator” as it mimics many other diseases such as those related to the heart, kidneys etc.The patient is often diagnosed to have nephrotic syndrome or migraines or liver disease without addressing the underlying problem which is Lupus. Thus leading to a MISDIAGNOSIS.
- Lupus needs a handful of specific blood tests that need to be done to be clinically diagnosed. Like, ANA (Antinuclear Antibody), Anti dsDNA (anti-double stranded DNA), C3 Complement, and other basic tests such as CBC.
- In most of the cases, medicines are stopped due to
- Lack of knowledge or awareness of its importance
- Lack of funds and financial constraints
- Social stigma / Change in bodily appearance especially owing to side effects of high dosage steroids/other drugs
- Alternative treatments without informing the Rheumatologist
- As the symptoms subside, the patient and their families often tend to conclude that the disease has been cured! However, these sets of medications need to be monitored and tapered gradually based on the rheumatologist’s observations.
- The Trust will work extremely hard to help patients return to a normal life with employability and financial security.
- Immunosuppressed conditions may often lead to infections which require antibiotics and protections.
- Due to frequent need for leaves and difficulties in working at a stretch, work efficiency and productivity might come down. In such situations, what one needs is empathetic thoughts from work authority and peer groups, resting space/sick rooms and work from home facilities.
- Under PWD Act, special facilitation and provisions could be introduced in all Public, Government and Private examinations
- The Trust will function as an HR for chronically ill patients , the trust will work as an outsourcing services group, where third-parties can outsource work for content creation Educational services and creative solutions.
Employment And Income
- Every Lupus Patient undergoes a financial beating during and post diagnosis. The Trust will strive hard to “Financially” serve the deserving in every way possible.
- The financial implications of lupus can be on monthly basis/ weekly basis/ Trimonthly basis.
- Regular blood tests
- Other organ check up – eye(retina), heart or other comorbidities
- Bone density/ AVN
- Nervous/ Myopathy
- BPL – Due to such diagnostic requirements and medications, the expenditure gets beyond the payment capacities of the below middle class. Reaching a state of acute pain, organ damage, disability and isolation.
- Once the treatment is taken care of with time, the patient can slowly and gradually improve. Majority of us can even return to work!
- Equity – Supporting hand to all impartially according to the needs and requirements, gives as much advantages and consideration to patients on the basis of the genuinity of their needs.
Policy makers and Govt. authorities
- The most prioritised activity of the trust would be bringing Lupus to the notice of authorities, policy makers to further avail benefits for eligible patients and their dependents. The Trust will associate and work hand in hand with govt and service groups.
- All Lupus patients who fall under BPL category ( family card should be BPL card). Moreover, if one falls in the BPL category, those patients can avail all state govt. benefits.
- A social Life protection insurance is required for Lupus patients. (At present 30,000/- (RSBY) is available for BPL (Below Poverty Line) people which are enhanced to 5 lakhs by Central Govt. Bring lupus under the health scheme for the BPL category.
- In the present scenario, there are no banks providing any health Insurance schemes for Lupus patients, even though it is a life-threatening illness that affects multiple organs.This needs to be changed. All major banks must include Lupus under their health insurance schemes.
- Lupus should be listed in Critical illness category for eg. Karunya Benevolent fund scheme of Kerala Government) Specified diseases and ailment category of IT Act too.
- The Trust will work towards bringing in subsidy for the cost of Medicines for Lupus patients irrespective of the organ involved.
- Request/plead to bring lupus under PWD Act (Rights of Persons with Disabilities Act, 2016) for Lupus patients. For Educational, Financial and Job benefits, predominantly.
- If a person who is studying with an Educational Loan is diagnosed with Lupus in midst of his education, there has to be an extended time period/reduction in the interest for him/her to pay off their debts.
- The Trust will also work towards including Lupus patients in the list of government’s special setting of bank debts schemes for various chronically diseased people.
- The acceptance of Lupus as a chronic illness for the help and support it requires shall be understood better by families and society as a whole through Empathy.
- Often the feeling of isolation and loneliness tends to kick in due to social stigmas attached to being chronically ill.
- The Delay of marriage or pregnancy, has only added stress and pressure to Lupus Patients.
- As most people with lupus are diagnosed between the tender age of 15 -35 , this is the crucial period in one’s life with every aspect, couple of years break in studies and in career can also cause huge stress and depression.
- Through the support group and further interaction of the members for public awareness, social empathy will be cultivated.
- Community participation in Health education
- Redefining the status and outlook of a chronically ill fighters in the eyes of society.
- Lot of patients who are Unemployed/ Discontinued Job often happen due to timings like night shifts and long stay overs. This can cause discomfort and the feeling of isolation in social events and gatherings.
- Non Supportive Family or Support System or Failed Marriage can further lead to depression and the feeling of loneliness. As a society it’s important to be taught how to empathise with such situations rather than sympathy or grudgeful talks.
Mental and Emotional Support
- Lupus Trust will function as a platform to bring together Lupus patients and their families. Thus serving humanity with Mental and Emotional Support.
- When one is diagnosed with lupus, it’s not only the patient who is severely taken a back but also the family. Often being able to speak to other such people/ patients itself can be a huge psychological and mental relief to both, the patient and their families,solely knowing the fact you are not alone. But with a group of people who understand you and are willing to stick with you through thick and thin. This itself can be rehabilitating.