Home Treatment For Gaucher Disease

In contact with a dear friend who courageously endures laborious kidney dialysis three times a week, I was reminded of when I first started the “Enzyme Replacement Therapy” via infusion for Gaucher disease, almost 24 years ago. At the time I had no choice other than to visit the hospital 3 times a week. Spending a lot of time in hospital on a frequent basis, naturally feels as if one’s life has turned into one long hospital visit. This in itself takes extra emotional strain, strength both physical and emotional, not forgetting endless patience! There is nothing more exhausting than a hospital visit as an out-patient, which I’m sure my friend, and in fact anyone relying on constant hospital treatment or medication will attest.

Having a little too much experience in this particular area, I really appreciate the ability of now having home-treatment, where a nurse comes to my house once every two weeks. It is so much easier and improves my quality of life tenfold receiving treatment in the comfort of my own home. Reducing the countless long hours I used to spend in hospital, not to mention all the working days my husband would lose when he would have to take me, is a huge improvement.

Another important factor is having the same caring nurse each time, which has obvious advantages. Over the years she has become a friend and an important part of my life. A qualified nurse, seeing a patient on a regular basis, particularly when dealing with a rare disease, can prove very helpful to one’s healthcare team. A nurse with experience and a watchful eye can fulfil a valuable role between patient and doctor.

Ever wondered why people stop phoning, dropping by for a visit. How ill health affects one's social life prompted my article this week in The Huffington Post: "Was it something I said?"