Who after me?? The Unspoken Dilemma of Rare Diseases                            Blog No 4 / WAM 1

 Who after me? This is a regular question in the minds of Joint Families, Businessman, Industrialist, Political parties, CEO’s, Various persons in different level of the organization, Rich families, farmers etc. This is a question that, haunts every person irrespective of type and size of the activity. This is a question to find out who will continue or eligible to manage the activity that I am doing in my absence. This absence can be short time as hours, days, months, years or If I am not there permanently.

This is also a question to answer delegation of work, Continuity of the work, satisfaction that the other person likely continues the way you expected and the beneficiary do not feel your absence. This is more an issue of succession plan of your existing activity.

This succession plan decides the future course of that activity. In business most of the times decision can be made on set of parameters which are measurables and based on the experience. Many times, the new person performs better than the previous person due to the new thinking, new ideas, better education, use of new technology, change in the market condition etc. While this is a serious and biggest questions, but according to me this is still a easier decision than the one I am going to talk about here.

If a health of even one family member is affected even for normal issues, It affects the entire family? Hope all of you agree with this statement? Now Have you ever imagined if this situation is life long? Scary right?

Can you imagine a replacing a mother? Difficult right?

YES, there is no substitute to mother. Except, the love and compassion most of the other works can be replaced. Many times, this can be overcome by presence of sister, brother, wife or children or we tend to live without mother as there is no alternative way. Specially when we are not physically dependent on mother. Life goes on.

Though life continues, the question lingers: Who after me? This isn’t just a challenge; it’s the daily reality for families grappling with rare diseases.

The issue of how will the Rare Diseases Patient live once their Parents, Guardian or Care Taker is no more capable of taking care of them is the scariest thought, one can have, leading to sleepless nights. Can you imagine if they disappear suddenly?

Believe me there is no answer to this? I have lived with this question for the last 20 years and heard from literally every parent I have met in my last 15 years of journey.

Most of you know that, rare diseases have several issues:

• They are rare in occurrence, haven’t been studied much. Hence less expertise in managing both by medical fraternity and by families.
• Rare disease can be visible by birth or childhood or during old age. This makes difficult for the family to cope up and plan
• Generally, affect multiple organs, the physical capacity, mental abilities and behavioral and sensory qualities of the patients. Or all of them. There is no single formula to manage. This demands regular change in what we do.
• They are serious chronic and generally degenerative and progressive these shakes both patients and families. We need to keep moving in dark.
• Many live with the fact that, I may lose vision, walking ability, talking ability, I will become bed ridden one day or I am going to die any time? This creates a lifelong psychological stress.

While the cost of treatment for such condition is exorbitant and cannot be managed by any family and need to find solution for these 5% of the conditions.

The rest 95% of the rare disease in absence of curative therapies, need to be managed throughout life long supportive treatment, therapies and home care.

Need finances for managing supportive treatment and procedures like scoliosis, immune separation therapy, correction surgery, regular special diet management, Physiotherapy, speech therapy, occupational therapy the list can go on ….. The cost may vary form few thousands per month to a few lakhs per month

Then there is a monthly expenditure of supportive cost towards medicines, Consumables, Nurse, Attender, medical devices etc.

More importantly its is a mother who takes care of these special lives. When Rare Disease Patients are kids, it is the parents who take care of them. It is easy initially.  When they grow up, it becomes very difficult to manage them. This is because, physically parents cannot lift      the adult patients due to weight and other issues. Medically, Adult Rare Disease Patients condition is too complex compared to kids. Hence, they need to live with 24*7 Care takers and a facility like hospital / of ICU at home. Today it is being managed by Out-of-pocket expenditure (OPE) of the parents and is not so easy manage for years? Many give up, many sell all there properties, many borrow funds and at high interest rates, many go into depression and some even commit suicide.

This isn’t just about rare diseases; it’s a broader concern encompassing differently-abled individuals and an aging population. The pressing question arises: Who will care for these individuals until the end? It’s a query that lingers, demanding solutions and suggestions. There is a need to address this issue those parents who have the already emotionally drained and socially isolated Rare Diseases Parents.

Who will take care of such persons till END. Do you have any idea? Solution? Suggestion. Please comment below:

Let us continue discussion on this in next blog.  Till than good bye.

Closing with a new year wishes to all of you.